How I Turned Huntington’s into My Life’s Passion for Change

My name is Antonio Maltese and I am a 22 year old senior Political Science major concentrating in International Relations and minoring in German at Virginia Commonwealth University. Back in December of 2016 when I was 19 years old, I tested positive for Huntington’s Disease.

My father never wanted to get the test for Huntington’s due to the pain and suffering that my grandmother had to go through before she passed away when I was about 10 years old. Described as a combination of Alzheimer’s, ALS, and Parkinson’s Disease, once symptoms begin, someone with Huntington’s Disease (HD) normally has ten years left to live. My father began showing signs of HD at almost 59 years old and he is on track to follow the same lifespan as my grandmother. Before being tested for HD my doctor said, “Even if you have it there isn’t a damn thing you can do about it”, but I’ve decided to fight Huntington’s in my own way.

HD has split my family apart. It’s kind of like saying “Voldemort” in my family- everybody knows what is, everyone knows what it is capable of, but very few have the courage to even speak its name. I am the only one in my family with the courage to face this disease head on and to learn, advocate, and fight for a cure. Many people might think testing positive for a gene that will eventually express into a terminal illness will bring me down or cause grief like it has with many members of my family.

However, for me it has had the absolute opposite of effect. Testing positive for Huntington’s gave me a sense of purpose by finding the HD and rare disease community. These communities have given me a sense of unity and support. I’ve found a sense of purpose so much greater than myself by fighting for something and for those who still hope and those like my father who have lost all hope. I thank God each and every day for having HD, and for giving me the willpower, the courage, and the necessary information, support, and resources in order to be part of one day finding the cure.

After testing positive, I joined the National Youth Alliance under the Huntington’s Disease Society of America and am currently training to become the Regional Lead as a point of support for all youth affected by HD in Virginia. I am a member of the Huntington’s Youth Organization, an organization I am proud to call my ohana. I was accepted into the Young Adult Representatives of RDLA (Rare Disease Legislative Advocates), also known as YARR, which is a program under the EveryLife Foundation. Shortly after being accepted, I was placed as one of the project architects on the Scientific Advocacy Committee. RDLA members advocate and lobby to bring more effective, safe, and affordable treatments to the rare disease community: a goal I have dedicated my life towards and aspire to make my career.

I have spoken on various podcasts describing my journey, shedding light on Huntington’s Disease, and spreading hope, empowerment, and support with each opportunity I am given. I attend informational conventions, conferences, and presentations, in a constant effort to gain necessary knowledge to further our mission in discovering a cure. I have also had the chance to speak at multiple conferences regarding awareness and advocacy. In 2018, I was chosen to be the keynote speaker at the “Courage: The Most Honorable of Human Virtues” conference on global issues at James Madison University. These can be viewed along with further information and updates on myself and the rare disease community on my blog.

I have an innate spark to advocate for people affected by rare or complex diseases and who feel like they are lost in the sea of political divide and left to fend for themselves. I am here to tell you that, while its easy to perceive yourself as alone, it’s not the case. I am going to do everything in my power to bring awareness to the first-ever genetically mapped neurological disease and let the world know, no matter how big or small, everyone has a story.

Everyone deserves a fighting chance. I am here to tell you that with courage, knowledge, hope, and support, we can and will voice our needs. We will voice our concerns to Congress and will find better, more effective, and more accessible treatments and cures. I am here to tell you there is hope and am proud to say I am part of the rare disease community. We are a family of warriors 30 million strong.

 


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