COMMUNITY Posted on: May 11, 2012
Imagine living with the knowledge that one day, a twitch of the hand could be the start of a downward spiral, causing you to lose control of your bodily functions, scream uncontrollably, forget who you are and eventually die.
That’s the reality 150,000 Americans experience each day because they have Huntington’s disease, referred to as “the monster” by those who have family members with the incurable disease.
Huntington’s is a hereditary disorder in which nerve cells in certain parts of the brain waste away causing physical, mental and emotional destruction. And it tends to hit people at their prime – their 30s and 40s. About 1 in 10,000 people are affected.
UCF College of Medicine M.D. student Samantha Ulmer knows she may be carrying the defective gene that causes the disease. Her grandmother had Huntington’s and died from it. Ulmer has decided not to get tested to find out if she has the gene.
“I’m young and living my life now,” Ulmer said. “At this point, I really don’t want to be focused on what may happen health-wise in 40 years. I want to live my life. I’ve seen the disease and how it affects people. I try very hard not to let the ‘what-ifs’ take over and take me to a dark place.”
Instead the New Jersey native is using her growing medical knowledge and social media skills to enhance the support network for patients in Central Florida.
She said she discovered that most people don’t know much about the disease, research has yet to produce good treatment options – let alone a cure, – and that there’s a support system in Central Florida for those who have the disease or for their caretakers, but few know about it.
Ulmer has worked with James Valvano, a St. Cloud resident and Huntington’s patient to help spread awareness about the needs and resources of people with Huntington’s disease. They used Facebook to survey local Huntington’s patients and their families to determine the services they need – and often are not getting. Part of the problem, advocates say, is that many doctors are unfamiliar with ways to treat the disease.
She’s now advocating for more research and more education, which is why she also is supporting Valvano’s first-of-its-kind project: WeHaveAFace.org. The website is a way to reach out to those with the disease. The website offers tips, resources and an opportunity for people to connect. WeHaveAFace.org is an independent, educational project comprised of a team of individuals within the Huntington’s disease and juvenile Huntington’s disease community.
Valvano also is now producing an international documentary called, “The Faces of Huntington’s disease: I am No Longer a Faceless Face.” The non-profit documentary, supported by Clarice Miller and Deon Leftenant of Deshalamar.org, is the first of its kind to be created solely by people affected by the disease. It’s trailer premiered this month on YouTube (http://www.youtube.com/wehaveaface ).
When finished the documentary will tell the story of many people around the globe who have the disease. It addresses how isolating the disease can be, how important finding a cure is and why creating a strong support network is critical.
“Sam is an amazing advocate for Huntington’s disease, and can make a significant impact within our community,” Valvano said. “Her strength and will to bring about awareness is what this community needs.”
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