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.<\/p>\n
That\u2019s the reality 150,000 Americans experience each day because they have Huntington\u2019s disease, referred to as \u201cthe monster\u201d by those who have family members with the incurable disease.<\/p>\n
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 \u2013 their 30s and 40s. About 1 in 10,000 people are affected.<\/p>\n
Samantha Ulmer, a medical student at the University of Central Florida in Orlando, knows she may be carrying the defective gene that causes the disease. Her grandmother had Huntington\u2019s and died from it. Ulmer has decided not to get tested to find out if she has the gene.<\/p>\n
\u201cI\u2019m young and living my life now,\u201d Ulmer said. \u201cAt this point, I really don\u2019t want to be focused on what may happen health-wise in 40 years. I want to live my life. I\u2019ve seen the disease and how it affects people. I try very hard not to let the \u2018what-ifs\u2019 take over and take me to a dark place.\u201d<\/p>\n
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.<\/p>\n
She said she discovered that most people don\u2019t know much about the disease, research has yet to produce good treatment options – let alone a cure, – and that there\u2019s a support system in Central Florida for those who have the disease or for their caretakers, but few know about it.<\/p>\n
Ulmer has worked with James Valvano, a St. Cloud resident and Huntington\u2019s patient to help spread awareness about the needs and resources of people with Huntington\u2019s disease. They used Facebook to survey local Huntington\u2019s patients and their families to determine the services they need \u2013 and often are not getting. Part of the problem, advocates say, is that many doctors are unfamiliar with ways to treat the disease.<\/p>\n
She\u2019s now advocating for more research and more education, which is why she also is supporting Valvano\u2019s 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\u2019s disease and juvenile Huntington\u2019s disease community.<\/p>\n