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.
