Monday, February 27, 2012

Rare Disease Day 2012


February 29, 2012 is Rare Disease Day. There are a number of events across the country to mark the day though you can do something on your own to raise awareness about rare disease. The Rare Disease Day Web site has great stories and information about rare diseases, to visit the site please click here.

Friday, February 24, 2012

Hemophilia Chapter News


Hemaware recently reported that several Executive Directors of local hemophilia chapters are retiring. Directors from the Delaware Valley Chapter, Northern Ohio Chapter, Hemophilia Association of the Capital Area, and Hemophilia Foundation of Oregon have retired or are retiring soon. To read the full story please click here.

Wednesday, February 22, 2012

Hemophilia Foundation of Northern California Annual Walk

The Hemophilia Foundation of Northern California will hold its annual hemophilia walk on World Hemophilia Day - April 21. The walk will take place at Cesar Chavez Park. For more information about the event, please click here.

Monday, February 20, 2012

Exercise and Pompe Disease


Check out this great article on livestrong.com on why exercise is important for people with Pompe Disease. Before starting any exercise regime it is important to talk to your doctor. To read the article, please click here.

Friday, February 17, 2012

New study promises mobility, major relief for people living with hemophilia

By Reid Coleman

I am excited to be participating in a new study that has major implications for the hemophilia community if it succeeds, which I hope it will. The change it has made in my life is absolutely miraculous.

In mid-January I received a device called WalkAide, which monitors my gait and adjusts my impaired right leg’s movement accordingly. Strapped just under my right knee, the device uses electrical impulses to improve the neural pathways between my foot and my brain, and it coordinates with my joint to handle stairs, bikes and other situations where adjustments must occur in my leg. WalkAide allows me to walk without a brace and work out without encumbrance, both of which should cut down on my bleeds and improve my overall health.

I am part of a study group that includes control and test subjects, with me being among the latter. Now that I have been evaluated for the program (which included an electrical stimulation test of my leg) and fitted for the device, I will be monitored to see how my body is improving from using WalkAide for six to eight times over the next year at a clinic in Greensboro, N.C., the closest participating center near where I live. So far I am quite impressed with the device, although I am still adjusting to it, and I have learned I cannot wear it all the time, as it constantly sends electrical volts that can be a little unpleasant and leave my leg somewhat sore.

This study is important because as people living with hemophilia, we tend to avoid using our muscles, which causes them to waste away and adds pressure to our joints to compensate. The heavier the weight we place on our joints, the more likely we are going to fall and/or bleed and increase our chance of joint disease. That leads to more reliance on medications, which in turn costs the government extra in Medicare and Medicaid payments to cover the cost of treatments.

To stop this cycle of dependence, WalkAide improves the use of your feet and toes and lets you become more active. With WalkAide, I am able to exercise even more in my five-days-a-week routine, which includes swimming and lifting weights, including 230 pounds on the leg press. I have made exercise the focal point of my life, and I believe other people living with hemophilia should as well for their health and safety.

This device is one of the best developments I have experienced in my lifelong efforts to live with hemophilia. My hemophilia is genetic on my mother’s side. At age 12, an undiagnosed massive cerebral hemorrhage sparked by my hemophilia caused me to bleed substantially, and I lapsed into a coma temporarily. Two weeks later after having surgery, I was left with mobility problems, and within two years I was put in a brace to keep me from moving my leg at certain angles.

I ended up developing a limp as my right leg grew a half-inch shorter than my left due to atrophy, and I cannot lift it on my own. With WalkAide, I now am able to raise that leg. My limp and my brain function to my leg have improved as well.

I hope that this study will provide positive results that we can and will roll out to other people living with hemophilia who share my situation.

Monday, February 13, 2012

NYC Hemophilia Walk Brunch


The New York City Hemophilia Chapter will hold a Hemophilia Walk Kickoff Brunch on Saturday March 3. Anyone interested in being a team captain and any others who have questions about the walk are invited to attend. The brunch will start at 10 am at Bareburger. For more information, please click here.

Wednesday, February 8, 2012

United Pompe Foundation Upcoming Event


The United Pompe Foundation will hold a patient social and meeting April 19-21 in North Carolina at Duke University. In addition to the social and networking time, there will be talks on current enzyme replacement therapy, the importance of diet and exercise as well as monitoring Pompe disease with MRIs. For more information about the event, please click here.

Monday, February 6, 2012

Hemophilia of North Carolina Teen Retreat



Hemophilia of North Carolina will host a Teen-Parent Retreat weekend February 10-12. The event will take place at Rockfish Camp and Retreat Center. There will be special sessions on career planning and finances. On Saturday night participants will have the opportunity to go Indoor Skydiving. For more information about the event please click here.

Friday, February 3, 2012

World Hemophilia Day 2012





The World Federation of Hemophilia announced that World Hemophilia Day 2012 will take place on April 17. The theme for this year is 'Closing the Gap' which is targeted towards the men and women who live with bleeding disorders but do not receive adequate care. For more information about World Hemophilia Day and how you can get involved, please click here.

Wednesday, February 1, 2012

Myasthenia Gravis 2012 Walks!





After a successful 2011 walk season the Myasthenia Gravis Foundation of America has launched the 2012 walk campaign. Time and dates for the walks are not available yet. The MGFA has set a goal for raising $575,000 for research for and awareness about Myasthenia Gravis. The walk dates will be posted as soon as they are available so check back for more details. For more information about the 2012 walk season, please click here.