Welcome to ‘Negative to Positives,’ A New Huntington’s Disease Column
Like many of you reading, I am from a Huntington’s disease (HD) family. I learned at the young age of 9 that my mom would progressively, slowly lose her ability to do absolutely everything. Around that same time, I also learned I had a 50% chance of inheriting that same decline. Regardless of my mom’s future and my fate with HD, my parents taught my sister and me to make sure that our glass wasn’t half empty, but full to the top.
Over 15 years, HD did take away my mom’s ability to work, eat, walk, and ultimately, live and breathe. What it didn’t take away was my mom’s fighting spirit, her will and courage to make a difference. My family started to fill our cup by getting involved with our local Huntington’s Disease Society of America chapter through attending events and eventually holding our own yearly fundraiser called a Hoop-a-Thon. Think basketball shooting and not hula hoops, although I don’t back down from any hula-hooping competition if it’s to raise HD awareness!
I decided to get the genetic test when I was in my early 20s so I could relieve some anxiety and better plan for my future. Fortunately for my family and me, my genetic outcome is a future life without HD. Being on that side of the coin toss is a blessing and relief, but also sparks a lot of personal guilt and emptiness. Why was I given relief from this disease? I’d felt my whole childhood of HD community involvement was building up my strength to sustain the blow. The negative test results didn’t make sense to me at the time, but the meaning has become clearer over the years.
I made one promise to myself and to others in the HD community: My negative result should turn into many years of positives for others. I told myself I would do whatever I could, whenever I could, with the skills I have to help eradicate this disease, all while doing my best to support everyone’s individual journey. That’s a bit of a mighty promise, but it seemed like a no-brainer for what I was given — a future life without HD.
In this continuous column I will share my many experiences, thoughts, views, and future outlook in the HD community. My experiences are vast from my time holding grassroots fundraisers, to professionally working at the pharmaceutical company that made the first FDA-approved treatment for an HD symptom, to co-founding and leading the Huntington’s Disease Youth Organization board of directors, to the thousands of interactions I’ve had with HD families and professionals from across the globe. I hope you are able to take something from these columns and find your own ways to fill your “half-empty” cup, to the top!
“Negative to Positives” will be posted on second and fourth Wednesdays.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Carla D Cullins
Thank you. I myself was blessed with a negative test also and being the only one out of six I know all to well about guilt. Your positive attitude is very inspiring and I look forward to reading your future articles.
Thanks for sharing, Carla. That negative test result is never something I'll complain about, but does come with that mental guilt. Appreciate you reading and commenting.
Love that word Positive!
Am sure I will be so interested in these columns, to keep my beautiful daughter who is in her early stages of HD, happy and positive until which time treatment and the ultimate cure will put HD so clearly behind us!
Thanks for reading! My best wishes to you and your daughter. As the column continues, please don't hesitate to let me know what you'd like future topics to be on.
I am desperately seeking info to get my best friend's youngest of two sons, Mark (young 40s) into a program/study for treatment. He is a recipient of a significant paternal family history (grandfather died early 60s, his dad, also at age 61, his dad's sister mid 40's, twin sisters also in their mid 40's. Mark's mother (Sue) had taken care of Mark's dad the whole time at home which not just anyone could have dealt with such an ordeal. Since last March, Sue was diagnosed with stage 4 brain CA & endured treatment. Presently a major miracle of remission! It would mean so much to be able to get the help & support Mark needs to have the opportunity to beat this very devastating debilitating disease. Please notify me, Linda NP-C, or her (Sue/608.565.7214) of any contact resources to support this wonderful family. I will forever be in debt & a constituent to the cause.
Hi Linda - thanks for reading and sharing your situation. Have you tried reaching our to your local HDSA Chapter or Center of Excellence? They will be able to guide your decision about clinical trial treatment options. Please feel free to reach out and I can try to properly connect you. [email protected]