MedPro Rx Specialized Pharmacy

NC Hemophilia Casino Night a Fun Success!

2012-01-30T10:15:00.000-05:00

The Hearts for Hemophilia Casino Night that was held on Saturday January 21 was a big success! 2012 marked the 5th year of the event. The fundraiser was held in Durham at the American Tobacco Campus. To view photos from the event, please click here.

Kawasaki Disease Awareness Day

2012-01-26T12:37:00.000-05:00

Today is Kawasaki Disease Awareness Day. Here is a news story about how one woman is working to raise awareness about the disease. For more information about Kawasaki Disease, please click here.

Hearts for Hemophilia Gala - Texas Central Hemophilia Associate

2012-01-25T16:13:00.000-05:00

Mark your calendars for March 3. The Texas Central Hemophilia Association will hold a Hearts for Hemophilia Gala at the Westin Dallas Fort Worth. The fundraiser will begin at 6 pm. For more information about the event, please click here.

2012 Hemophilia Walks

2012-01-23T10:30:00.000-05:00

The National Hemophilia Foundation is kicking off the 2012 Hemophilia Walk season with a new Web site! This year there will be 24 walk locations across the United States. Not all the locations have set the time and date for the walks but you can still visit the new site by clicking here.

Educational Meeting on Gaucher Disease

2012-01-20T13:48:00.000-05:00

The National Gaucher Foundation will hold an informational meeting on Gaucher Disease in Ft. Lauderdale, FL on February 26. The event will take place at the Double Tree from 12-3 in the afternoon. Lunch will be served. The session will offer attendees time to have questions answered about the treatment of Gaucher Disease. For more information, please click here.

Check out this Hemophilia Video

2012-01-18T15:07:00.000-05:00

Here is a really great video for young adults and adults on hemophilia and what happens during the coagulation process. If you know of any other good educational videos on bleeding disorders or autoimmune disorders please let us know!

2012 NHF Washington Days

2012-01-16T15:26:00.000-05:00

The National Hemophilia Foundation's 2012 Washington Days are fast approaching. The dates have been set for March 7-9. There will be plenty of time to meet with lawmakers and staff as well as time to network with other families affected by bleeding disorders. For more information or to register please click here.

Upcoming Meetings for the Greater Florida Chapter of the Myasthenia Gravis Foundation of America

2012-01-12T11:31:00.000-05:00

If you live in the Florida Area and are looking for a Myasthenia Gravis support group meeting, then there are some meetings coming up in the next several weeks.

Boynton Beach Support Group - January 21 at 1 pm
Daytona Beach Support Group - January 28 at 10 am
St. Petersburg Support Group - February 2 at 7 pm
Jacksonville Support Group - February 4 at 1 pm

There are a number of other support groups in the Florida area that have upcoming meetings but do not list dates and times. For all Greater Florida support groups contact information and meeting information, please click here.

2012-01-11T13:58:00.002-05:00

The Hemophilia of North Carolina 5th annual Casino Night "Hearts for Hemophilia" is quickly approaching. The event will take place on January 21 at the American Tobacco Campus in Durham and will start at 6:30. For more information please click here.

Central Texas Hemophilia Association - Balancing Sports and Exercise

2012-01-09T13:54:00.005-05:00

The Central Texas Hemophilia Association will host an evening talk on Balancing Sports and Exercise. The presentation will be in Spanish and will take place at Pappasitto’s Cantina in Arlington, TX. For more information about the event, please click here.

Lysosomal Disease Network - 8th Annual World Symposium

2012-01-04T14:29:00.003-05:00

The Lysosomal Disease Network will host the 8th Annual World Symposium February 8-10. The conference will be held at the Manchester Grand Hyatt in San Diego, CA. For registration and schedule information, please click here.

Hemophilia of Indiana - Hearts for Hemophilia

2012-01-03T15:09:00.003-05:00

Hemophilia of Indiana will hold the Hearts for Hemophilia Dinner Dance and Gala on February 17. The fundraiser will take place at the Historic Union Station-Crowne Plaza Downtown Indianapolis from 6:30 pm to midnight. For more information about the event please click here.

Happy New Year!!!

2011-12-31T17:12:00.001-05:00

From everyone at MedPro Rx, we would like to wish you and your family a Happy New Year filled with lots of happiness and great health!

12th International Conference on Myasthenia Gravis and Related Disorders

2011-12-29T08:38:00.001-05:00

The 12th International Conference on Myasthenia Gravis and Related Disorders will be held May 21-23, 2012. Professionals in the medical field will be presenting papers on a number of different topics pertaining to Myasthenia Gravis; there will also be time given for panel discussions and networking. For more information about the speakers and other events please click here.

Hemophilia Federation of America - Symposium 2012

2011-12-21T13:53:00.002-05:00

Save the date for March 30-31, 2012. The Hemophilia Federation of America will host the 2012 Symposium in Santa Clara, CA. The theme for the 2012 Symposium is Embracing our Future. For more information about the event, please click here.

Youngblood 5K - VA Hemophilia Foundation

2011-12-19T13:13:00.002-05:00

The Virginia Hemophilia Foundation will hold its annual Youngblood 5K in less than two months. The walk/run will be held on February 18th in Midlothian, VA. For more information about the event please click here.

National Fabry Disease Foundation Community Newsletter

2011-12-16T13:25:00.003-05:00

The National Fabry Disease Foundation publishes a monthly newsletter with great information for patients and their families. Links to past newsletters are also available. To read this month's newsletter, please click here.

Education is Power Scholarship

2011-12-15T11:45:00.000-05:00

There is still plenty of time to apply for the 2012 MedPro Rx Education is Power scholarship. For the application and requirements for applying, please click here!

Hemophilia Foundation of Maryland 2012 Walk

2011-12-14T14:09:00.003-05:00

The Hemophilia Foundation of Maryland has set the date for the 2012 Hemophilia walk fundraiser! Mark your calendars for June 23. The walk will take place at the Quiet Waters Park in Annapolis, Maryland. For more information, please click here.

GBS Story of the Month

2011-12-12T14:16:00.003-05:00

The GBS/CIDP Foundation International Web site features a monthly story about someone affected by Guillain-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy. To read the Story of the Month, please click here. There is also information about how you can tell your story and maybe have your story as the story of the month!

Myasthena Gravis Foundation National Conference

2011-12-09T15:05:00.000-05:00

The Myasthenia Gravis Foundation of America will hold its annual national conference April 25-27, 2012. The conference will take place at Bally's Hotel in Las Vegas. There are an number of great speakers scheduled who will cover a variety of topics that are of interest to Myasthenia Gravis patients and their families. For more information about the event, please click here.

NHF - Steps for Living Web site

2011-12-07T14:29:00.002-05:00

The National Hemophilia Foundation has an excellent source for people living with hemophilia, their families and care givers. There are sections for children, tweens, and young adults that are specific to the differences in lifestyles of the different age groups. To visit the Steps for Living Web site, please click here.

Pan Handle of Maryland and West Virginia Myasthenia Gravis Meeting

2011-12-05T13:51:00.004-05:00

The Myasthenia Gravis Foundation Pan Handle of Maryland and West Virginia Support Group Chapter will hold a meeting on December 10th. The meeting will take place at 10:00 am. For more information please click here.

VA Hemophilia - "Balancing Sports and Exercise"

2011-12-02T15:10:00.002-05:00

The Virginia Hemophilia Foundation will host a dinner on December 13 with a talk that will focus on sports and exercise and hemophilia. The event will take place at the Hilton Richmond at 6:30. For more information about the event, please click here.

Cook's Corner - Split Pea Soup

2011-11-30T13:39:00.005-05:00

This is a great recipe for the cooler weather! The picture really does not do the flavor of the soup justice so you will just have to whip this up and try it for yourself.

Split Pea Soup

+ 1 bag of split peas
+ 1 quart of vegetable stock
+ 2 tablespoons extra virgin olive oil
+ 1 medium yellow onion - diced
+ 1 celery stalk - diced
+ 1 large carrot - diced
+ 3 sprigs fresh thyme
+ 2 bay leaves
+ salt and pepper to taste
+ 3 cloves garlic - chopped

Wash and sift through peas - there could be small stones mixed in. Move to medium saucepan and cover with 2 inches of water and bring to boil. Remove from heat. Keep covered and let pan sit for 1 hour.

Drain and wash peas and set aside in a bowl.

Add 2 tablespoons of olive oil to medium saucepan. Add celery, carrots, and onions. Cook over medium heat until onions are translucent (about 10 minutes). Add peas, vegetable stock, thyme, bay leaves, salt and pepper and bring ingredients to a boil. Reduce heat to medium-low heat. Cook until peas and other vegetables fall apart- about 1 hour. Add vegetable stock if soup is too thick. Remove bay leaves and thyme sprigs.

Before serving, taste soup and add salt or pepper if necessary. Add garlic before serving.

For a soup with a smooth consistency an immersion blender can be used after the soup has cooked for an hour. Be sure to remove the bay leaves and thyme sprigs before blending.

Educational Meeting on Gaucher Disease

2011-11-28T13:49:00.002-05:00

The National Gaucher Foundation is hosting an educational meeting in Salt Lake City, UT. The event will take place on December 3 at the Marriot Salt Lake City Downtown from 12-3 pm. There will be lunch. The session will be a Question & Answer format on Gaucher Disease and the treatment of it. For more information, please click here.

Possibility for New Hemophilia Treatment

2011-11-23T10:26:00.000-05:00

A study that was recently published in Nature Biotechnology announces some exciting news for the bleeding disorder community. Research conducted at the Children's Hospital of Philadelphia showed that a genetically engineered coagulation protein - Xa - successfully helped restore the ability of blood to clot and helped to lower blood loss. This coagulation factor protein was specifically engineered to have a longer effective lifetime and to reduce interactions within the subject's body. The subjects of the study were mice, however based on the results of the study researchers want to test the new protein in other animal subjects.

Source:

Engineered Protein Shows Promise as New Hemophilia Treatment - http://medgadget.com/2011/10/engineered-protein-shows-promise-as-new-hemophilia-treatment.html

Hemophilia NC Holiday Celebration

2011-11-21T13:20:00.003-05:00

Hemophilia of North Carolina will holds its Holiday party celebration on December 3 at the Charlotte Motor Speedway. There will be a guest speaker, games and crafts for kids, and a special drive through light show. For more information about the event and to register please click here.

Myasthenia Gravis Foundation - Northwest Texas Chapter

2011-11-18T13:58:00.000-05:00

If you are in Northwest Texas and you or one of your family members has Myasthenia Gravis here is an excellent resource for you. The Northwest Texas Chapter of the Myasthenia Gravis Foundation of America has information on local support groups and personal stories of life with Myasthenia Gravis. To visit the Web site, click here.

NHF Volunteer of the Year Award

2011-11-14T08:34:00.002-05:00

We are so proud to announce that our very own Harvey Gates received the National Hemophilia Foundation's Volunteer of the Year award. Harvey is a MedPro Rx Community Advocate. The award was given at the NHF's annual meeting which took place in Chicago.

Thank you to all volunteers who spend countless hours helping with and advocating for the hemophilia community!

International Pompe Association

2011-11-11T14:23:00.002-05:00

Check out this Web site which is a great resource for Pompe disease patients and their families. The International Pompe Association site is full of information about the condition, patient testimonials, as well as as information about events and gatherings. For more information, please click here.

2012 Fabry Disease Calendars

2011-11-09T13:40:00.000-05:00

Make a donation to the National Fabry Disease Foundation and receive a 2012 calendar! The calendar is full of colorful pictures and information to raise awareness about Fabry disease. For more information about the calendars and how to order them, please click here.

HACA Holiday Party

2011-11-08T11:14:00.000-05:00

The Hemophilia Association of the Capital Area will hold its 2011 Holiday Party on December 4. The event will take place at the Imagination Stage in Bethesda, MD. For more information about the event and how to attend and RSVP, please click here.

MG Central Texas Support Group

2011-11-04T13:25:00.002-04:00

The Myasthenia Gravis Central Texas Support Group will hold its next meeting on November 9. The meeting will take place at the Austin Public Library Spicewood Springs Branch at 7 pm. For more information about the meeting or the group, please click here.

NHF Annual Meeting in Chicago

2011-11-02T13:34:00.002-04:00

There is less than 2 weeks left until the National Hemophilia Foundation's Annual meeting. The event will take place November 10-12 at the Hyatt Regency Chicago. The theme of the meeting is "Inspiration in the Windy City." Sessions cover themes for healthcare providers, parents, and kids. For a full list of presentation and other information about the Annual Meeting, please click here.

Neuromuscular Disease – Two Book Reviews

2011-10-31T13:51:00.002-04:00

Neuromuscular diseases affect the body’s ability to control its muscles. There is a variety of these diseases, and all of them can be difficult to live with. Different categories of neuromuscular disease exist, including autoimmune neuromuscular diseases, in which both the immune and muscular systems of the body are being affected by the disease. Having good resources that include a first-rate health care provider, a pharmacist who understands your condition, and books to help you understand the condition that you or a family member might be living with – all of these can make life a little bit easier.

Here are two books that may be helpful:

“Raising a Child with a Neuromuscular Disorder,” by Charlotte E. Thompson, M.D.,

Having a child with a neuromuscular disease can be a challenge, and Dr. Thompson’s book provides great insight into the categories of the disease, and guides parents how to help their children get through the countless doctor’s appointments as well as through problems at school. The author, Charlotte E. Thompson, M.D., is a board certified pediatrician. From 2005 to 2008, she was named each year as one of the nation's top pediatricians by the Consumer's Research Council of America. She is an assistant clinical professor of pediatrics at University of California Medical School in San Diego and the author of eight nonfiction books.

Available from Amazon.com at: http://www.amazon.com/Raising-Child-Neuromuscular-Disorder-Professionals/dp/0195128435/ref=sr_1_1?s=books&ie=UTF8&qid=1319830496&sr=1-1

“Guide to Evaluation and Management of Neuromuscular Disease,” by John R. Bach, M.D.
This guidebook is a good resource for anyone who has a neuromuscular disease and wants more information about how to treat and manage their disorder. Being an expert on your condition and gathering enough information to understand it is important, and this book can help, since it takes such an in-depth approach to neuromuscular disease treatment and management. The author, John R. Bach, MD, is professor of physical medicine & rehabilitation; vice chairman, department of physical medicine & rehabilitation; professor of neuroscience; and co-director, Jerry Lewis Muscular Dystrophy Association Clinic, UMDNJ -The New Jersey Medical School, in Newark, N.J.

Available at Amazon.com at: http://www.amazon.com/Guide-Evaluation-Management-Neuromuscular-Disease/dp/1560533013/ref=sr_1_1?s=books&ie=UTF8&qid=1319830429&sr=1-1

Cook's Corner - Stuffed Peppers

2011-10-26T14:26:00.003-04:00

This recipe is a good one if you have some time to prep a meal for the next day or if you need a meal to freeze. The ingredients are simple it just takes a little time to assemble but these stuffed peppers are definitely worth the time. If only green peppers are available (they are usually the most economical option also) they tend to have a more peppery flavor to them - its not a problem just something to keep in mind. Also, brown rice is a bit more healthy than white rice and the cheese and sauce usually masks the brown rice flavor so its worth a try!

Stuffed Peppers

4-6 peppers, preferably red, orange, or yellow
1lb fresh ground sirloin
1 cup cooked rice (white or brown)
¼ cup parmesan cheese
½ cup Tomato& Basil Sauce
Salt
Pepper

Italian seasoning

1 cup shredded mozzarella cheese
Extra sauce

Brown sirloin in a large skillet. Added cooked rice, parmesan cheese, and ½ cup sauce. Add salt, pepper, and at least one tsp Italian seasoning. Adjust seasonings, sauce, and cheese to taste.

Boil a pan of water large enough to hold 2-3 peppers. Wash peppers and cut in half lengthwise. Clean out pith. Alternatively, slice off top and clean out insides. Submerge peppers in boiling water 3 - 5 min. Remove and place in casserole dish. Fill pepper halves or wholes with meat mixture. Spoon on additional sauce to cover peppers. Top with mozzarella cheese. Serve with extra sauce.

Bake at 350F for 45 min.

NC Hemophilia Casino Night

2011-10-24T15:25:00.001-04:00

Mark your calendars for a fun night for a great cause. Hemophilia of North Carolina will host the 5th annual Casino Night "Hearts for Hemophilia" on January 21. The event will take place at the American Tobacco Campus in Durham and will start at 6:30. For more information please click here.

Don't forget to apply for the Education is Power Scholarship!

2011-10-21T14:26:00.001-04:00

Applications for the Education is Power Scholarship program are now available. Application forms can be found on the MedPro Rx Web site or by clicking here. Applicants must have hemophilia or von Willebrand Disease and as well be enrolled in community college or university in the fall of 2012 - as well as a few other requirements. There is a podcast that features our scholarship coordinator speaking about the program and its benefits.

Hemophilia of NC Walk a HUGE Success!

2011-10-19T14:06:00.007-04:00

Our booth!

The Hemophilia of North Carolina walk was a big success! $78,751 was raised which was $13,751 more than the goal!!! The weather was perfect for the 4th annual walk. Here are a few pictures we took from the event. Thanks to everyone for participating and raising money and awareness for hemophilia.

Walk Kickoff

Carolina Hurricanes Booth

Walk Registration

10th International Kawasaki Disease Symposium

2011-10-17T14:47:00.000-04:00

Mark your calendars for the 10th International Kawasaki Disease Symposium! The Symposium will take place on February 7-10, 2012 at the Hyatt Regency in Kyoto, Japan. There will be talks and forums to discuss the treatment of and research of Kawasaki Disease.

GBS/CIDP Support Meeting

2011-10-14T12:55:00.004-04:00

The Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy group of Webster, NY will hold a support group meeting on October 15 at 9:30 am. The meeting will be held at the Webster Assembly of God Church. Neurologist Dr. Amy Chen will be at the meeting to discuss both Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy. For more information, please click here.

Cowboy for a Cure

2011-10-12T13:59:00.003-04:00

Here is a great story about a man who is dedicating time in his life to raise awareness about Guillain Barre Syndrome by riding a horse across the country! Johnny is riding from California to New York state. GBS is a condition that effects the immune system. For more information about Johnny's journey or to donate to the cause, please click here.

NC Hemophilia Walk

2011-10-10T14:04:00.003-04:00

The Hemophilia of North Carolina Walk is less than one week away. There is still time to register and donate! Hemophilia of NC is only about $500 away from reaching the $65,000 fundraising goal! The walk will be held on October 15 at Lake Crabtree County Park. For more information about the walk, please click here.

Parent-2-Parent Online Forum

2011-10-07T14:46:00.003-04:00

Here is a great resource for parents whose children have chronic conditions. The Parents-2-Parents online forum provides a space for parents to discuss a number of children's issues as well as a specific area of the forum to discuss chronic medical conditions. To check out the forum please click here.

Hemophilia Outreach Center

2011-10-05T14:19:00.000-04:00

The Hemophilia Outreach Center is a great source for hemophilia support services in Northeast Wisconsin and the Upper Peninsula of Michigan. There are a number of programs to assist people and families who live with bleeding disorders. For more information about the Hemophilia Outreach Center, please click here.

Kawasaki Disease 5k!

2011-10-03T14:22:00.004-04:00

A couple from Shelby, Ohio is organizing a 5K to help raise money for Kawasaki Disease. The fundraising will take place on October 29 at 10am. Participants who register early will receive a race t-shirt. There will also be a silent auction before and after the race. For more information about the even please click here.

Photo Source: Click here.

2011 Fall Family Weekend

2011-09-30T13:56:00.002-04:00

Hemophilia of Maryland is holding the 2011 Fall Family Weekend October 7-9. The educational event will be held at Lake Raystown Resort in Entriken, PA. There will be speakers, time for networking and even a carnival on Saturday night! For more information, please click here.

NYC Hemophilia 2011 Gala

2011-09-28T12:26:00.000-04:00

Mark your calendars for November 5 because the New York City Hemophilia Chapter will hold the 2011 Gala. The event will take place at Bayard's which is in the historic India House downtown. There will be cocktails followed by dinner as well as music, a silent auction and award presentations. To learn more about the event please click here.

Team Kawasaki Disease Success in San Francisco

2011-09-26T12:11:00.000-04:00

Team Kawasaki Disease participated in the “Start! San Francisco Heart Walk” which benefited the American Heart Association. The event took place on September 17 at the Golden Gate Park. Team Kawasaki was able to raise funds and awareness for the American Heart Association and for the Kawasaki Disease Foundation. Team Kawasaki is made up of people who wanted to memorialize survivors of Kawasaki Disease.

Cook's Corner - Chicken Tetrazzini

2011-09-21T13:25:00.004-04:00

This recipe is is a warm tasty recipe for the cooler weather that is coming in. To make this recipe healthy you can use the low-fat low-sodium cream of chicken soup and try using wheat pasta or omega-3 pasta option. I prefer using fresh mushrooms rather than the canned. If you go with the fresh mushroom option you need a small box of sliced mushrooms and cook them thoroughly before mixing them in with the rest of the ingredients. Cook them in with a tablespoon of olive oil over medium heat until the mushrooms have sweated out.

Chicken Tetrazzini

Preheat oven to 350

½ box spaghetti, cooked
2 tsp butter, melted
2 cans cream of chicken soup (undiluted)
½ cup milk
2 cups cooked chicken, diced
1 can mushrooms (or fresh)
¾ cup parmesan cheese, grated

Combine all ingredients into a large bowl.
Put into buttered 9x13 casserole dish.
Bake 25-30 mins.

22nd Annual Swing for the Kids

2011-09-19T14:23:00.003-04:00

The Florida Hemophilia Association is holding the 22nd Annual Swing for the Kids golf tournament on October 17. The event will take place at the Deering Bay Yacht and Country Club which is close to Miami. The funds that are raised will go to support programs put on by the Florida Hemophilia Association. For more information, please click here.

New England Family Weekends

2011-09-14T14:15:00.003-04:00

There are two weekend getaways in October for people and families living with hemophilia!

October 8-10 the Bleeding Disorders Advocacy Network Fall Retreat will take place in Brantingham, NY at the Aldersgate Camp and Retreat Center. Their will be programs there for couples, families and kids who have a bleeding disorder.

October 14-16 the Hole in the Wall Gang Camp Hemophilia Family Weekend will take place in Ashford, CT. The program is geared for children ages 5-15 who have hemophilia and their families. There is no charge for this program.

For more information about these two weekend excursions please click here.

National Gaucher Foundation Online Auction

2011-09-12T14:21:00.003-04:00

The National Gaucher Foundation will hold an online auction October 1 through October 31. The money raised from the auction will go to support education, awareness and research of Gaucher Disease. There is a huge selection of great items to bid on to help support a good cause. Please click here for more information on the auction as well as a list of items being auctioned.

Dental Care and Hemophilia

2011-09-09T13:55:00.003-04:00

In the September issue of HEMAWARE there is an excellent article about choosing the right dentist for you or your child who has a bleeding disorder. One of the best resources for finding a dentist who treats people with bleeding disorders is to ask at your Hemophilia Treatment Center or your local Hemophilia Foundation chapter. It is important to be proactive in order to receive the best possible information and treatment. For the link to the complete article, please click here.

Myasthenia Gravis Support Group Meeting in Scranton

2011-09-07T14:14:00.000-04:00

Mark your calendars for October 1. The Myasthenia Gravis Foundation of America NEPA has a Support Group Meeting on October 1 in the Charles Luger Outpatient Center in Scranton, PA. For more information about the meeting please click here.

MedPro Kids - Bleeding Disorders Section!

2011-08-31T13:29:00.003-04:00

Check out the 'Bleeding Disorders' section of the MedPro Kids site. In addition to the games that are available on the Web site, there is information about hemophilia and von Willebrand disease that is geared for kids. The information presented is written so that kids will understand it and there are pictures and diagrams that help illustrate different points.

Don't forget to sign up to walk in a Myasthenia Gravis Walk!

2011-08-29T12:57:00.001-04:00

Lace up your walking shoes and help the Myasthenia Gravis Foundation of America reach and surpass their fundraiser goal by walking in one of the 2011 Fall Walks! There is still time left so find a walk close to you. Here are the Fall Walk locations:

+ Phoenix, AZ
+ Los Angeles County, CA
+ Sacramento, CA
+ San Diego, CA
+ San Francisco, CA
+ Boston, MA
+ Kansas City, MO
+ St. Louis, MO
+ Portland, OR
+ Seattle, WA
+ Fall Virtual Walks

Only about $3,600 more in donations is needed to reach the Association's goal of $325,000! For more information, please click here.

Mark your Calendars!!!

2011-08-24T14:07:00.003-04:00

Mark your calendars for the 2012 World Hemophilia Foundation's World Congress. The event will take place in Paris France July 8-12, 2012. For more information about the event please click here.

$40,000 Raised at the Colorado Hemophilia Walk!

2011-08-23T10:20:00.000-04:00

The Colorado Hemophilia Walk was held on August 13 raised $40,000! The walk raised lots of funds for the organization but also raised awareness about hemophilia in the Denver area. Keep checking back here for more information about other walks in the 2011 season.

Myasthenia Gravis Scientific Sessions

2011-08-22T14:59:00.000-04:00

Mark your calendars for the Myasthenia Gravis Scientific Sessions! The event will be held on September 14 at the Hilton San Francisco. The Scientific Sessions are geared for medical professionals who want to learn about the latest studies and information on Myasthenia Gravis. For more information about this event please click here.

Rheumatoid Arthritis – Book Reviews

2011-08-19T12:53:00.000-04:00

Rheumatoid arthritis is an autoimmune disease characterized by chronic inflammation of the joints, and at times, surrounding tissue and organs. In more serious cases, the disease can lead to the destruction of cartilage, bone and ligaments. Your doctor is a great source for information about your condition, but here are a few books that you may find useful to read.

The First Year-Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed
Being diagnosed with a new condition can be a little frightening, but with a good doctor and the right information, you can be an informed patient. For anyone new to Rheumatoid arthritis, this book is for you. The book is written by a patient turned expert, which provides an interesting first-hand perspective on Rheumatoid arthritis.

Living with Rheumatoid Arthritis
Living with Rheumatoid Arthritis is an extensive guide with an abundance of information about the condition. The book is published by Johns Hopkins Press Health Book and is written by Rheumatologists. This book is a great resource not only for people who have Rheumatoid arthritis, but for family members as well. Information about treatment, progression of the condition and exercise are covered in detail.

How to Eat Away Arthritis: Gain Relief from the Pain and Discomfort of Art hritis Through Nature's Remedies
This book provides a comprehension diet plans that can teach you about different foods that are better for Rheumatoid arthritis patients as well as foods that should be avoided. Not only does the book explain potentially good foods for patients to consume, but it also shows how to recognize which foods are appropriate for your diet, because not everyone will be affected by the same foods.

Sources:
Amazon.com - http://www.amazon.com/First-Year-Rheumatoid-Arthritis-Essential/dp/1569243646/ref=pd_sim_b_1

GoodReads.com - http://www.goodreads.com/book/show/620092.The_First_Year_Rheumatoid_Arthritis

Google Books - http://books.google.com/books/about/Living_with_rheumatoid_arthritis.html?id=L9RkQgAACAAJ

MedPro Rx - http://www.medprorx.com/rheumato.html

NEW Myasthenia Gravis Support Groups in the North Carolina!

2011-08-17T15:02:00.003-04:00

There are several new Myasthenia Gravis support groups with upcoming meetings in the next week or so.

The Durham/Chapel Hill Support Group will meet on the third Saturday of every month starting August 20. The group will meet at the Southwest Regional Library in Durham. For information please call the Carolinas Chapter MGFA - (877) 643-2221.

The Charlotte Support Group will meet on the fourth Saturday of the month starting August 27. The group will meet at the Ronald McDonald House in Charlotte, NC. For more information please call (877) 643-2221 or email Suzanne at zebheads@carolina.rr.com

Victory for Women with Bleeding Disorders

2011-08-15T13:58:00.000-04:00

The Victory for Women with Bleeding Disorders is an initiative by the National Hemophilia Foundation to educate and empower women who have bleeding disorders such as von Willebrand Disease, hemophilia and platelet disorders. A diagnosis of a bleeding disorder is important so that the symptoms can be properly managed and the patient can have a better quality of life. For more information about the Victory for Women with Bleeding Disorders program please click here.

Three Months Until Chicago and the NHF Annual Meeting

2011-08-11T12:30:00.001-04:00

Mark your calendars for November 10-12 for the National Hemophilia Foundation Annual Meeting. This year it will be in Chicago. There will a number of great speakers, breakout sessions and roundtable discussions. The meeting will be a good time for networking with other people living with hemophilia and families who have children with hemophilia.

Cook's Corner - Pasta Salad with Asparagus and Red Pepper

2011-08-10T13:47:00.000-04:00

Here is a fun recipe that is great for summer veggies. It is from the magazine Cook's Illustrated. This recipe is nice because you can do the prep the night before and serve it the next day. The key to this recipe is using fresh parmesan cheese.

Pasta Salad With Asparagus and Red Peppers

1 ½ pounds asparagus, tough ends trimmed

3 large red bell peppers, cored, seeded and cut into 1 ½-inch strips

½ cup extra-virgin olive oil, plus more to toss with vegetables

Salt and ground black pepper

¼ cup freshly squeezed lemon juice

½ teaspoon grated lemon zest

1 medium clove garlic, minced or put through garlic press

1 pound short, bite-size pasta such as fusilli, farfalle or orecchiette

3 tablespoons chopped fresh chives

1/3 cup grated parmesan cheese

Bring 4 quarts water to boil in large pot over high heat. Meanwhile, toss asparagus and peppers with olive oil and salt and pepper to taste. Grill asparagus until tender and streaked with light grill marks, 5 to 7 minutes, or roast in a 425-degree oven for 8 to 10 minutes, depending on thickness, shaking pan once halfway through the cooking. Grill peppers, using grill basket if you have one, until tender and lightly charred, about 8 minutes, or roast in 425-degree oven until tender and lightly browned, 15 to 17 minutes; cool to room temperature.

Whisk lemon juice and zest, ¾ teaspoon salt, garlic and ground black pepper to taste in large bowl; whisk in ¾ cup oil in slow, steady stream until smooth. Add pasta and 1 tablespoon salt to boiling water. Cook until pasta is al dente; drain. Whisk dressing again to blend; add hot pasta, cooled asparagus, peppers, chives and grated parmesan cheese; toss to mix thoroughly. Cool to room temperature, adjust seasonings, and serve.

Myasthenia Gravis Support Group of Central Texas Meeting

2011-08-08T13:37:00.000-04:00

On Wednesday August 10 the Myasthenia Gravis Support Group of Central Texas will hold a support meeting at 7 pm. The meeting will be held at the Austin Public Library Spicewood Springs location. For more information please click here.

VA Hemophilia Foundation - First Steps Picnic

2011-08-05T15:08:00.003-04:00

The Virginia Hemophilia Foundation is hosting a First Steps picnic in Richmond on Sunday August 7. The event is geared toward families who have children who have been diagnosed with a bleeding disorder in the past seven years. The picnic will take place the the Lewis Ginter Botanical Gardens at 10:30 am. For more information please click here.

Weight Loss, Nutrition and Hemophilia

2011-08-04T11:01:00.000-04:00

Maintaining a healthy, safe and active lifestyle while living with hemophilia is very important for adults who have hemophilia and parents of children who have hemophilia. A healthy lifestyle does not just involve food but encompasses diet, exercise and a positive attitude to stay focused on being healthy. Here are a few tips for living a healthy lifestyle and maintaining it for a lifetime. Consult your doctor first before changing your diet or exercise routine.

Getting on the Right Track

Losing weight with hemophilia is possible! Review with your doctor the steps to take to reach your weight goal. Here are some things to keep in mind when you have that conversation:

+ Exercise Regularly – Even if you only do 20-30 minutes of low-stress physical activity per day, that is a great start. Try getting into a routine of exercising two or three days a week and build from that. It is important to start slowly.

+ Set Reasonable Goals – Weight loss does not happen overnight. Especially for those with a chronic condition, weight loss should be gradual.

+ Don’t Forget Breakfast – Skipping breakfast is not a good idea when it comes to losing weight. People who skip breakfast generally overcompensate or overeat later in the day.
Staying on the Right Track

Maintaining a healthy weight and healthy diet is so much easier than struggling to get back on track after gaining weight. Behind a healthy lifestyle is a healthy, motivated mindset. Studies have shown that children who are overweight are less likely to do well in sports. Here are some ideas to consider when maintaining a healthy lifestyle:

+ Eat Healthy – Keep your meals fresh and interesting with seasonal fruits and vegetables. Be careful about the salty, sugary foods that are easy to reach for but less healthy. Check out our recipes in the Recommended Diet for Hemophiliacs section of our blog.

+ De-stress and Sleep More – Several recent studies have shown that people who are less stressed sleep better at night. People who are overstressed and do not sleep enough have slowed-down weight loss. If you want to keep the pounds off, try to de-stress and get a good night’s sleep.

Sources:
Staying Fit with Hemophilia - http://www.hemaware.org/story/staying-fit-hemophilia

Type 2 Diabetes - 8 Steps to Weight-Loss Success - http://www.everydayhealth.com/diabetes/type2/managing/secrets-of-weight-control.aspx

Less Stress, Better Sleep May Help You Lose Weight - http://consumer.healthday.com/Article.asp?AID=651334

Photo Source - http://www.jamesyourpersonaltrainer.com/BlogPost.aspx?id=7d771d9a-a0f0-4720-8cce-b9110b9c5cd9

52 Scholarships Winners in 2011

2011-08-03T15:51:00.001-04:00

This year we are thrilled to announce that there were 52 scholarships awarded under the Education is Power scholarship program. Scholarships were awarded to students in 18 states. Since the inception of the program in 2006 over $300,000 has been awarded to students living with hemophilia and von Willebrand disease who are pursuing higher level education. The next round of scholarships will be awarded in 2012 but applications will be available September 26. For more information, please click here.

Gaucher and Fabry Patient and Family Conference

2011-08-01T13:29:00.000-04:00

Mark your calendars for the Colorado Lysosomal Disorders Program Gaucher and Fabry Patient and Family Conference on August 27th. The conference will take place at Children's Hospital Colorado from 9:00am to 11:30am. There will be a couple joint sessions as well as breakout sessions. Please click here for more information.

Possible Improvements for IVIg Medicare Patients

2011-07-27T15:14:00.001-04:00

A bill recently introduced in both houses of Congress could change the way that Medicare patients receive their IVIg infusions. Current legislation under the Medicare IVIG Access Act of 2008 covers IVIg infusions but does not reimburse for in-home infusions. This means that patients must go to infusion centers or hospitals to receive their medication. Under the proposed bill, a study will be done to determine the benefits of in-home infusions.
What is the Medicare IVIG Access Act?
The Medicare IVIG Access Act was created and passed to give patients living with primary immunodeficiency diseases and other autoimmune disorders the ability to be treated with the lifesaving IVIg medication they need. Without IVIg, people with these disorders are very susceptible to illnesses that most people would not be concerned about. A common cold could be dangerous to someone with an immune deficiency if that person is not receiving his or her IVIg treatment. With IVIg, people who have immunodeficiency diseases can live relatively normal lifestyles.

What are the implications of the new bill?

Once the study has been conducted and the information compiled about in-home IVIg infusions, and lawmakers understand the benefits of home infusion therapy, the possibility exists that more than just the IVIg medication will be covered by Medicare. When a person has an IVIg home infusion, a nurse must be present and infusion equipment is needed. Nursing services and in-home equipment are not currently reimbursed by Medicare.
Sources:

Immune Deficiency Foundation Applauds Legislation to Improve Medicare Patient Access to Immunoglobulin Products - http://www.prnewswire.com/news-releases/immune-deficiency-foundation-applauds-legislation-to-improve-medicare-patient-access-to-immunoglobulin-products-122529628.html

Clinical Immunology Society - http://www.clinimmsoc.org/educational-resources/ivig/medicare-ivig-access-act-summary

Immune Deficiency Foundation - http://primaryimmune.org/patients-and-families/bill-of-rights-for-patients-with-pidd

National Fabry Disease Foundation Blog

2011-07-22T15:07:00.001-04:00

The National Fabry Disease Foundation has started a new blog! Jerry is writing the blog. He is writing with the purpose to raise awareness about Fabry Disease as well as keep everyone informed about events in the Fabry disease community.

Primary Immune Deficiency

2011-07-20T14:16:00.001-04:00

Most people don’t consciously think about all the day-to-day exposure we come into contact with, as we typically rely unknowingly on our immune system to fight off colds, infections, viruses and other disease-causing microbes. The immune system works efficiently to protect our bodies. Therefore, people who suffer from immune deficiencies are at a much higher risk of infection, because they lack an immune system capable of fighting these infections and viruses.

Primary immune deficiency diseases impact people who are born without a properly functioning immune system, or one that is nonexistent. These diseases are not contagious, but unfortunately, they are inherited from family members. Genetic defects can lead to an immunodeficiency disease as well. The World Health Organization (WHO) identifies more than 150 primary immunodeficiency diseases. The increased vulnerability to infection for those with primary immune deficiency diseases sometimes results in repeated, long-term or unusually severe infections.

Symptoms:

Symptoms of primary immune deficiency diseases can vary wildly form person to person, from severe to cases so mild they are undetected for years. What’s more, symptoms can differ depending on the particular type of disorder that infects a person. Infections and viruses can appear in many parts of the body, including the skin, brain, ears, throat, sinuses, lungs, spinal cord, and the urinary and intestinal tracts.

Among the many signs and symptoms of primary immune deficiency diseases are:
• Frequent, recurring ear infections, pneumonia, meningitis, bronchitis, sinus infections or skin
infections
• Blood infections
• Inflammation and infection of internal organs, such as the liver
• Autoimmune disorders, such as lupus, arthritis or type 1 diabetes
• Blood disorders, such as low platelet counts or anemia
• Digestive problems, such as cramping, loss of appetite, nausea and diarrhea
• Delayed growth and development

Treatment:

Since people suffering with primary immune deficiency are more susceptible to infections due to the lack of antibodies in their system, they typically need immunoglobulin, which helps the body to kill germs that could cause infections. Intravenous therapy can help the body generate this vital immunoglobulin. Most side effects of this treatment are mild and can be by slowing down the rate of infusion instead of discontinuing therapy.

People with primary immune deficiency diseases live their entire lives more susceptible to infections, and if their conditions are not treated, it can lead to recurring or long-term health problems, including permanent damage to organs such as the ears or lungs, or physical disability. Fortunately, with proper medical care, many patients live full and independent lives.

Sources:

http://www.primaryimmune.org/about_pi/about_pi.htm

http://www.mayoclinic.com/health/primary-immunodeficiency/DS01006/DSECTION=symptoms

http://www.immunedisease.com/patients-and-families/ivig-therapy/

Myasthenia Gravis Fall Walks

2011-07-18T14:48:00.001-04:00

Here are a list of locations for Fall walk dates for the Myasthenia Gravis Association.

+ Phoenix, AZ
+ Los Angeles County, CA
+ Sacramento, CA
+ San Diego, CA
+ San Francisco, CA
+ Boston, MA
+ Kansas City, MO
+ St. Louis, MO
+ Portland, OR
+ Seattle, WA
+ Fall Virtual Walks

Keep checking back for the dates and times.

Huge Success at the St. Pete Wiffle Ball Tournament

2011-07-15T15:14:00.001-04:00

Over $150,000 was raised for the JMF’s Southeast Primary Immunodeficiency Fund at the St. Pete wiffle ball tournament! The event took place on July 3 at the Don CeSar Beach Resort on St. Pete Beach and there was lots of food, fun, and games. Organizers want to especially thank everyone who participated in the event and all the sponsors who made the event such a success!

Hemophilia of North Carolina Kickoff Event

2011-07-13T15:23:00.000-04:00

Join the Hemophilia of North Carolina for the NC hemophilia walk kickoff event. The event will take place on August 6 at the Durham Bulls game. All who are involved with the October walk are invited to attend including team captains, walkers, and volunteers. There will be fundraising ideas and ways to get other people involved. For more information, please click here.

Exercising with Hemophilia

2011-07-11T15:31:00.000-04:00

Exercise is important for all individuals, but for those with hemophilia it provides muscular strength and a lower body weight, inevitability improving and maintaining joint health. For many, exercising and leading an active healthy lifestyle is critical, as some suggest that particular training methods can decrease the frequency of bleeding potential. There are countless ways that those with hemophilia can maintain an active lifestyle and have fun, but also be safe and protect themselves at the same time.
Warming-up and Cooling-down:

These are the most important parts of any exercise routine. The before and after of each workout
prepares your body for a workout, then helps your muscles and joints adjust and relax afterwards. Warm-ups and cool-downs help prevent injuries, which in turn help prevent unwanted bleeds.

When warming up, make sure all stretches are performed slowly and held for approximately 30 seconds. Try to focus on your breathing techniques and overall balance by not bouncing and pulling to extend a stretch, as this may lead to muscle damage. The cool-down should consist of at least a five-minute intense form of the exercise you are previously performing. For instance, if you are running, then your cool-down could be walking at a much slower pace for five to 10 minutes. Before you start any program, touch base with your physical therapist or your treatment center, to find out if there is a specific warm-up or cool-down routine that’s right for you.
Dancing:

Beside the enjoyment of swinging your hips from side to side, there are many benefits that come from dancing. Many people lose weight from dancing because of the aerobic nature of the moves, which keeps your heart rate up. It also helps to tone muscles, increase endurance levels and one study, even found that it may help prevent the onset of Alzheimer’s disease.

It is best to try a dancing class with a friend if you are a beginner. Make sure to take your time when learning new moves so you do not fall, and avoid dancing with maneuvers that are too aggressive, as this could lead to unwanted bleeding due to strenuous movement.
Hiking:

Hiking is another acceptable activity if performed with caution and preparedness. This can be a great form of exercise for all individuals. It is suggested that for anyone starting out to begin on a clear, flat surface. As you build endurance and strength, move to more challenging terrains. Investing in a pair of hiking shoes is essential to help you balance and prevent falls on uneven terrain.

Be Prepared:

Whether you are walking on the treadmill, dancing a samba, or hiking a mountain trail, make sure you are prepared with ice kits, treatment and anything else you typically need if a bleed occurs.

Sources:

http://www.thereforyou.com/managing-hemophilia/sports-and-exercise/warming-up-cooling-down.html

http://www.hemaware.org/health-wellness/fitness-nutrition/dance-as-exercise

http://www.hemaware.org/health-wellness/fitness-nutrition/hiking-with-hemophilia

http://www.livingwithhemophilia.com/webapp/pdf/living-fit-with-exercise.pdf

Photo Source:

http://hopperscrossingpersonaltraining.com.au/members/?attachment_id=724

Hemophilia Web Games

2011-07-06T14:36:00.000-04:00

Have you visited MedPro Kids lately? Don't forget to check out the games section of the Web site. It is a safe place for kids to have fun and learn about bleeding disorders. To visit the site, please click here.

Cook's Corner - Summer Squash Casserole

2011-07-01T15:06:00.000-04:00

Here is a yummy recipe that is a classic at my mom's house. This recipe is a good one for summer because finding fresh squash shouldn't be too hard - check out your local farmers market!

Summer Squash Casserole Recipe
6-8 squash, quartered, seeded, and cut into chunks
1 Vidalia onion, sliced
1 can cream of chicken soup
1/4 cup of sour cream
1 cup shredded parmesan cheese
1 box of herb seasoned croutons
salt
pepper
Italian seasoning

Preheat oven to 350. Boil squash and onions for 5 minutes. In a separate bowl, mixed the cream of chicken soup, sour cream, cheese, dash of salt, pepper and Italian seasoning. Drain the squash and onion well and add into the cheese bowl. Add the croutons. Pour into casserole dish and bake in for 30 minutes.
Why I really like this recipe?
This recipe is easy and one that is a crowd pleaser. It keeps in the refrigerator for a few days if you have leftovers and is a healthy snack.

Wiffle Ball Tournament at St. Pete Beach

2011-06-29T16:27:00.000-04:00

Come out and support those with primary immunodeficiency (PI) and have some fun by playing wiffle ball. The event will take place on July 3 at the Don CeSar Beach Resort on St. Pete Beach with a beach bash, barefoot dancing, kid’s games and wiffle ball games and fireworks. For more information about the event, please click here.

Tailoring Your Hemophilia Treatments

2011-06-29T15:52:00.000-04:00

No matter which therapy or treatment you use, the most important thing is safety. First, you must understand your disease and the impact it has on your body. When selecting a method of treatment, consider your personal lifestyle and make sure to allow for adequate time for treatment. Remember that staying healthy and being active are a great way to start any treatment.
Replacement Therapy:

Replacement therapy is used to help stop or prevent bleeding. The therapy regulates the blood for a few hours and involves infusing either human plasma or recombinant. The use of replacement therapy may come with complications and is not a long-term treatment, requiring constant follow-ups. Patients applying this treatment can potentially develop antibodies, which will combat against the treatment. These antibodies, which may cause pain or joint swelling, are referred to as inhibitors and occur in about 20 percent of people.
Self-Infusion:

Self-treatment brings the ultimate goal – independence. For patients dealing with hemophilia, relying on family members or nurses to help treat them can be a nuisance and at times a debilitating process. By learning how to correctly self-infuse, patients can be on the path to freedom.

Treating hemophilia with self infusion requires knowledge and understanding of specific materials. For children learning how to self-inject, it is particularly important that they are trained how to perform treatments safely and accurately. Topics such as fear of needles and not using previously used veins must be discussed before self-treatment can be set in motion.

Other Treatments:

Another possible treatment, desmopressin, helps the body produce more of its own Factor VIII. A treatment administered into the bloodstream slowly with one shot, this treatment is an effective method, but is only able to address mild cases of hemophilia.

Most doctors will also suggest the use of RICE or Rest, Ice, Compression, Elevation. Resting and ice will help alleviate swelling and bruising, but be sure to use the ice for no longer than 20 minutes each time. Using an ACE bandage is the best for compression. Try to elevate injuries above the heart for best results as well.

Sources:

http://www.hemophilia.ca/en/bleeding-disorders/hemophilia-a-and-b/the-treatment-of-hemophilia/factor-replacement-therapy/

http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_treatments.html

http://www.pharma.bayer.com/scripts/pages/en/news_room/news_room/news_room81.php

http://www.cincinnatichildrens.org/about/patient/hemophilia-jd-westbrook.htm

http://www.medicalnewstoday.com/info/hemophilia/treatment-for-hemophilia.php

http://www.healthtree.com/articles/hemophilia/treatment/

http://hemophilianavigator.com/managing-a-bleed/safety/rice/

Moms Group Meeting in PA

2011-06-27T15:18:00.000-04:00

The Western Pennsylvania Chapter of the National Hemophilia Foundation will hold a Moms Group Meeting on July 9. The meeting is for moms who have a bleeding disorder or moms who have children who have bleeding disorders like hemophilia and von Willebrand Disease. For more information about the meeting please click here.

Myasthenia Gravis and Physical Therapy

2011-06-24T14:15:00.001-04:00

Livestrong.com recently published a great article titled "Physical Therapy For Myasthenia Gravis". Myasthenia Gravis is characterized by muscle weakness during physical activity so it is important you discuss any changes to your exercise routine with your doctor. The topics in this article include different exercises for your muscles as well as breathing exercises and techniques. To view the article please click here.

Lowering Your Risk for Multiple Sclerosis with Vitamin D: The D-eal

2011-06-22T14:31:00.000-04:00

There are plenty of reasons to be excited about the onset of summer, a favorite being the opportunity to catch some rays. Did you know, however, that more studies are finding an increase in vitamin D, whose production is prompted by sun exposure, can help lower your risk of developing multiple sclerosis (MS)? Allow me to explain a bit here:
How Vitamin D works
Vitamin D is a fat-soluble vitamin that aids in the absorption of calcium, moderates phosphorus levels in the blood and affects immune cells. Exposure to sunlight causes the production of vitamin D, which has an impact on immune cell functionality and melanin (pigment) production. Because MS is believed to be somewhat autoimmune in nature, the vitamin’s effect on immune cells is imperative to its role in risk reduction.
Where’s the Proof?
While it is still difficult to pinpoint exactly where vitamin D falls into the equation in MS prevention (note that lowering the risk for MS is not the same as preventing the disease altogether), repeat evidence from scientific studies show individuals who experience regular outdoor sun exposure exhibit a 25 to 57 percent less chance of developing the disease. The fluctuation in number depends on factors including time of year, location and amount of time spent outdoors. These same studies note that populations in locations closer to the equator have less instances of MS overall.
A Cautionary Tale
It would be counterintuitive to recommend we all go spend countless hours basking under the sun in an effort to prevent MS. For example, the risk of skin cancer from the use of tanning beds far outweighs any benefits one could possibly hope to obtain health-wise. The same goes for outdoor exposure; unadulterated (and unprotected) sun exposure is not the answer to preventing MS, and any time outdoors should be preceded with sunscreen.

CNN Health – Vitamin D May Lower MS Risk: http://articles.cnn.com/2006-12-19/health/vitamin.d.ms_1_vitamin-d-levels-sunshine-vitamin-multiple-sclerosis?_s=PM:HEALTH

Everyday Health – Can You Prevent Multiple Sclerosis? http://www.everydayhealth.com/multiple-sclerosis/multiple-sclerosis-prevention.aspx

Medline Plus – Vitamin D: http://www.nlm.nih.gov/medlineplus/ency/article/002405.htm

MedPage Today – Childhood Sun Exposure May Lower Multiple Sclerosis Risk: http://www.medpagetoday.com/Neurology/MultipleSclerosis/6236

My Health News Daily – Life in the Sun Lowers Multiple Sclerosis Risk: http://www.myhealthnewsdaily.com/sunlight-lowers-multiple-sclerosis-risk-1138/

Science Daily – Sun Exposure, Vitamin D May Lower Risk of Multiple Sclerosis: http://www.sciencedaily.com/releases/2011/02/110207165422.htm

Heisman Trophy Winner diagnosed with GBS

2011-06-20T14:24:00.001-04:00

The 1996 Heisman Trophy Winner, Danny Wuerffel, was recently diagnosed with Guillain-Barre Syndrome. The cause of GBS is unknown however it is usually preceded by a lung or gastrointestinal infection. In patients who have GBS, the antibodies that were fighting the infection start attacking the nervous system. One of the treatmet options for GBS is IVIg therapy. The IVIg helps to block the antibodies that are attacking the nervous system. For more information about GBS please click here.

Photo source

Lupus: An Overview

2011-06-15T12:51:00.000-04:00

Lupus, an autoimmune disorder that currently affects almost 2 million Americans, is characterized as a hyperactive immune disorder, which causes an attack on normal, healthy tissue and results in inflammation, swelling, and damage to the joints, skin, kidneys, blood, the heart and lungs. Systemi Lupus Erythematosus (SLE) is a more severe type of the disease due to its effects on internal organ systems of the body.

Some Statistics on Lupus

While lupus is present in about 2 million Americans including 200 per 100,000 African Americans, it also affects 40 out of 100,000 Northern Europeans. Individuals are typically diagnosed between the ages of 15 and 45, with the rate of women affected being nine times higher than men. This particular statistic is indicative of a potential link between the possible causes of lupus and hormones.

What is the Prognosis?

Contrary to popular belief, lupus generally is not a fatal disease. With modern medicine, ongoing research and new developments in the field, 80 to 90 percent of lupus sufferers can expect to live a normal life span. In cases where lupus is fatal, the cause is often related to overwhelming infection or organ failure.

What are the Typical Symptoms?

Depending on the severity of the case and type of lupus, symptoms vary. Like most autoimmune
conditions, there are periods of relapse and remission that can be somewhat unpredictable. Here is a comprehensive overview of symptoms:

+ Joint pain and swelling
+ Development of arthritis (frequently affected joints are the fingers, hands, wrists, and knees)
+ Chest pain when taking a deep breath
+ Fatigue
+ Fever with no other cause
+ General discomfort, uneasiness or ill feeling (malaise)
+ Hair loss
+ Mouth sores
+ Sensitivity to sunlight
+ Skin rash (a "butterfly" rash over the cheeks and bridge of the nose affects about half of people
with SLE)
+ Swollen lymph nodes
+ Headaches
+ Mild cognitive impairment
+ Numbness, tingling, or pain in the arms or legs
+ Personality change
+ Psychosis
+ Risk of stroke
+ Seizures
+ Vision problems
+ Digestive tract: abdominal pain, nausea and vomiting
+ Heart: abnormal heart rhythms (arrhythmias)
+ Kidney: blood in the urine
+ Lung: coughing up blood and difficulty breathing
+ Skin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon)

Keep an eye out for our future posts on a breakdown of classes of lupus, and testing and treatment options. In the meantime, if you genuinely suspect that you or a loved one is affected by lupus, contact your physician immediately.

Sources:
Bloomberg Businessweek – FDA Approves 1st New Lupus Drug In 50 Years: http://www.businessweek.com/lifestyle/content/healthday/650740.html

Lupus Foundation of America, Inc. – Prognosis and a Hopeful Future: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2238zoneid=523

Medical News Today – What is Lupus? http://www.medicalnewstoday.com/info/lupus/

PubMed Health – Systematic Lupus Erythematosus: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/

Photo Source: www.truthout.org

Success at the New York City Hemophilia Chapter Walk

2011-06-13T14:29:00.000-04:00

The NYC Hemophilia Chapter had great success at their recent fundraiser walk. The goal of $200,000 was surpassed at the Chapter's 6th Annual walk with over 1,000 walkers raising financial support and awareness for hemophilia. Look out for the 2012 walk dates!!!

Cook's Corner - Tomato and Cucumber Salad

2011-06-10T13:59:00.001-04:00

Last night we whipped up a really easy side salad but it was so good I figured this would be a great recipe to kickoff the Cook's Corner section of our blog. Last year we posted about Recommended Diet for Hemophiliacs. It has been one of our most popular posts.

Tomato and Cucumber Salad Recipe
1 medium cucumber washed and peeled
1 large tomato (or 8 campari tomatos - I think they taste the best)
3 Tablespoons Olive Oil (you may need a bit more or less depending on the size of the veggies)
Italian seasoning to taste (We have the McCormick grinder that works well for this and most any dish)

Why I really like this recipe?
No dressing needed. Prep time is only 5-10 minutes. Cucumbers and tomatoes are pretty easy to find in the grocery store or maybe they are coming out of your garden this time of year! This salad can compliment just about any summer time meal.

Myasthenia Gravis Awareness Month

2011-06-08T14:27:00.001-04:00

Alaska Governor Sean Parnell recently declared June Myasthenia Gravis Awareness Month. In the proclamation it "encourage(s) Alaskans to offer support to those affected by Myasthenia Gravis, and to become further educated on this disease." For more information about Myasthenia Gravis and how the disease can be managed please click here.

Parents Place on MedPro Kids!

2011-06-06T10:14:00.000-04:00

Even though the MedPro Kids Web site is for kids, there is a great section for parents. There is information about hemophilia and von Willebrand Disease as well as a section on support services. The information is also easy for older children to understand about conditions that they may have or their siblings or maybe even a friend. For a direct link to the section, please click here.

5K Walk/Run to Stop the Bleeding

2011-06-03T15:18:00.000-04:00

The Hemophilia Foundation of Maryland will hold a 5K Walk/Run to Stop the Bleeding on June 25th at 9:00am at the Clarence "Du" Burns Arena in Baltimore Maryland. Registration fee is $25 in advance or $30 the day of the walk. For more information, please click here.

Weeding Out the Pain: Gardening with Rheumatoid Arthritis

2011-06-01T15:57:00.000-04:00

As spring takes over and summer creeps slowly toward us, we can’t help but let the urge to indulge in our love for the outdoors take over. While this is easy for most, Rheumatoid Arthritis (RA) is notorious for making it nearly impossible for others.

Modern research has found that contrary to popular belief, gardening can actually be a therapeutic outlet for individuals with RA.

For all of the green thumbs out there suffering from RA, here are some tips that will enable you to take advantage of your favorite hobby this season:

1. Equip Yourself With the Right Tools – One of the main challenges RA patients experience when it comes to gardening is aggravation to joints caused by gripping shovels and various planting tools. There are many alternatives to traditional gardening tools that help with this problem, including products that have extensions (for those with RA in the knees) and adaptive gripping aids.

2. Location is Everything – And not just when it comes to real estate! Locating your garden close to a water source and within proximity of a convenient resting area will greatly reduce the amount of energy you exert when tending to it. You may also opt to use window boxes in lieu of planting in the ground to minimize the physical element of gardening projects.

3. Don’t Forget to Stretch – Remember that gardening is a form of exercise, and like any other physical activity you should always stretch before and after to avoid injury or RA symptoms from worsening. Be kind to your body, practice correct posture, take frequent breaks and even consider getting a gardening buddy to help.

If you are interested in pursuing your passion for gardening this season, or are just looking for a new hobby, consult your physician about the best plan to get started. Your doctor is more knowledgeable about your RA condition and specific areas of difficulty, and will be able to provide you with the best plan to move forward.

Arthritis Today – Gardening Tips for Everyone: http://www.arthritistoday.org/daily-living/do-it-easier/in-the-garden/gardening-arthritis.php

Arthritis Supplies.com – Gardening Tools for People with Rheumatoid Arthritis: http://
www.arthritissupplies.com/site/371928/page/62687/rheumatoid

e-How Home – How to Garden for People with Rheumatoid Arthritis: http://www.ehow.com/
how_2112356_garden-people-rheumatoid-arthritis.html

NapsNet.com – Gardeners with Rheumatoid Arthritis Can Keep Green Thumbs Without Sore
Joints: http://www.napsnet.com/pdf_archive/60/60378.pdf

Two Walks, One Great Cause

2011-05-31T09:54:00.000-04:00

If you are in the New York or Massachusetts area this weekend, lace up your shoes and start walking to raise awareness and funds for two hemophilia chapters.

The New England Hemophilia Association will hold its Hemophilia Walk fundraising on June 4 at 10 am. For more information, please click here.

The New York City Hemophilia Chapter will hold its Hemophilia Walk on June 5 at 10 am. For more information about that walk, please click here.

For more information any other Hemophilia Walks, please click here.

Myasthenia Gravis Association - Missouri and Kansas

2011-05-25T15:42:00.001-04:00

Check out another great association's Web site. The site for the Myasthenia Gravis Association of Missouri and Kansas has a number of resources and even a great video! Click here to visit the site.

Pompe Disease: An Overview

2011-05-25T14:22:00.000-04:00

The physical signs of Pompe disease are so discreet, they may even go unnoticed. An awkward limp or waddle in a young child, especially one just learning to gain his or her balance isn’t uncommon, but persistent waddling in children such as Eric Hamlin can be one of the first signs of a severe and potentially terminal disorder.

What is it?
Pompe disease is a rare and fatal disorder caused by mutations in a gene that makes an enzyme called alpha-glucosidase (GAA), which immobilizes the heart and muscles from proper functionality. Under normal circumstances, the body has the ability to break down glycogen (stored sugars used for energy), but for those with this gene mutation, the essential enzymes are reduced or completely eliminated. As excessive amounts of glycogen collect, the cells within the heart and skeletal muscles become significantly damaged.

Forms of Pompe:
There are two forms of Pompe disease – infantile and juvenile adult. Infantile, commonly referred to as early-onset, is typically recognized within the first few months following birth and continues to progress at a rapid pace. The worst case scenario is that the progression will continue to the point of a child’s death by the age of two years old due to heart failure. With juvenile adult, or late-onset, the progression moves at a much slower pace, but muscle weakness remains the same.

Treatment:
Because of extensive research uncovering the details of the GAA gene, physicians now have a healthier understanding of the biological mechanisms and properties that encompass the GAA enzyme. Myozyme, an enzyme replacement, has been developed and approved by the U.S. Food and Drug Administration. The drug been praised for its successful results in reversing muscle damage, reducing muscular weakness and enhancing overall life expectancy. Patients with Pompe need consistent and specialized care to manage disease progression.

National Institute of Neurological Disorders and Stroke: http://
www.ninds.nih.gov/disorders/pompe/pompe.htm

Pompe Community: http://www.pompe.com/en/patients/managing-
pompe.aspx

Los Angeles Times: http://latimesblogs.latimes.com/booster_shots/2010/05/
the-fda-approves-new-drug-for-pompe-disease.html

United Pompe Foundaton: http://www.unitedpompe.com/magazine.cfm

National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://
www.niams.nih.gov/Health_Info/Pompe_Disease/default.asp

VA Hemophilia Foundation Annual Meeting

2011-05-23T14:18:00.002-04:00

The 2011 Annual State Meeting for the Virginia Hemophilia Foundation is less than one month away! The meeting will be held on June 17 and 18 at Second Baptist Church in Richmond, VA. Both the Virginia Hemophilia Association and the Hemophilia Association of the Capital Area will present chapter updates. There were will be a number of exhibits and a programs for children. For more information, please click here.

Myasthenia Gravis Foundation of California

2011-05-20T14:27:00.001-04:00

The Myasthenia Gravis Foundation of California has a great Web site with information on support groups in the state as well as a newsletter section and a section in Spanish. Please click here to visit their site.

Myasthenia Gravis is an autoimmune neuromuscular disease characterized by weakness in the skeletal or voluntary muscles. One of the ways that Myasthenia Gravis is treated is with IVIg. For more information about Myasthenia Gravis please visit our Web site by clicking here.

New England and New York Hemophilia Walks

2011-05-18T13:47:00.000-04:00

The New England Hemophilia Association and New York Hemophilia Chapter are holding fundraiser and awareness walks in the next few weeks. For more information about registration, please click here. The dates and locations of the walks are listed below. The hemophilia walks raise funds to help support the local hemophilia organizations as well as awareness about hemophilia.

New England Hemophilia Association - Sat, June 4
Francis William Bird Park, Walpole, MA

New York City Hemophilia Chapter - Sun, June 5
Riverside Park, NY, NY

Guillain-Barré Syndrome

2011-05-17T10:01:00.000-04:00

An autoimmune disorder, Guillain-Barre syndrome occurs when the body’s immune system erroneously attacks particular parts of the nervous system for unknown reasons. Commonly referred to as GBS, the unsystematic attacks cause nerve inflammation, leading to muscle fatigue and exhaustion. Unfamiliar with what causes GBS, research has traced the disease to most often precede a minor infection. Symptoms typically present themselves after the original infection has departed.

Symptoms
Because GBS is concentrated on nerve damage, symptoms are most recognizably in the form of pain. As the disease progresses, paralysis will spread, causing a patient’s muscular tenderness. The root of GBS pain comes from paralyzed muscles, incautious movement, excess pressure or uncomfortable lying positions.

Early stages of pain can be compared with cramps, throbbing or aching sensations, or equivalent to the pain of kidney stones. As patients transition toward the recovery stage, so does the pain, since it becomes heavily focused in the hands and feet, causing burning and sensitivity. The shift in pain is caused by the nervous system’s healing process and will increase with any form of heavy lifting or excess strain on the muscles.

Treatment
If signs of difficult breathing are present, most GBS patients are hospitalized and admitted into an intensive care unit. The goal of immediate treatment, because GBS is currently incurable, is to reduce the pressing symptoms, propose immunotherapy in an effort to shorten the duration of the disease and maintain the body’s muscle mass. Treatment management, which occurs immediately after diagnosis, is focused on removing or blocking antibodies from the bloodstream. Removing or redirecting antibodies, which are proteins that attack the nerve cells, may reduce the intensity of GBS.

One of the essential elements when dealing with GBS patients is to recognize and understand their need to be kept calm. Though the disease is serious and paired with high levels of stress, the majority of patients experience recovery.

Sources:
HealthCommunities.com: http://www.neurologychannel.com/guillain/treatment.shtml

Medline Plus: http://www.nlm.nih.gov/medlineplus/ency/article/000684.htm

Planet Marcussen: http://www.jsmarcussen.com/gbs/uk/treatment.htm