Lately, I have felt more motivated than ever to figure out how to get my voice heard when it comes to medical research. Over the last nine years of knowing that I tested positive for Huntington’s Disease (HD), I have only participated in two observational studies. The problem with this is that there are over 20 companies working on some type of treatment for Huntington’s Disease, yet I cannot participate whatsoever. Participating doesn’t necessarily mean joining the trial, but to work with these companies on understanding the needs of young adults who are either at risk or tested positive.
After being witness to the slow deterioration of my mom, I’m not sure pharmaceutical companies are focused on the right symptoms of HD. Yes, my mom had physical manifestations. Her balance sucked and people thought she was drunk, but perhaps more difficult for all of us were these terrible mood swings, major depression, feelings of irritability, and a lack of motivation. Luckily, despite all of this she kept her sense of humor and positive outlook on life towards the end of her battle.
If you were to ask me what I would prefer, I would rather deal with the motor symptoms than the cognitive and psychiatric symptoms – but unfortunately, nobody is asking me or the thousands of other young adults who are at risk or tested positive for HD.
Young adults are the future of the HD community and will one day either participate in the trial or take an FDA approved drug, so how come our voices aren’t being heard now? Do we want to participate in gene therapy (one-time), spinal taps every 3-4 months, oral pill 1-2 times per day? What type of side effects are we okay dealing with? What symptoms would we prioritize from the many different motor, cognitive, and psychiatric symptoms?
I know someone is officially diagnosed with HD when showing motor symptoms, yet many young adults, like myself, wonder if there are earlier signs of HD through the cognitive and psychiatric symptoms.
I know we cannot look too far into the future and need to remind ourselves about living in the moment, but there is a difference between being pessimistic and realistic about the future. Some people tell me I am being too pessimistic/negative when I am trying to be realistic about what might happen. It’s important to understand what I can do today to not only live in the moment but also make a difference to advance medical research in HD. Young adults, like myself, are hungry to get involved in medical research and provide our insight. To those 18+ companies out there trying to find effective treatment or a cure for HD – let’s chat on implementing the young adult voice so that we are fully prepared when the time comes that you begin targeting those of us who have tested positive but are pre-symptomatic.