The most common cause of death for people who have Huntington’s is suicide. Once, when talking to a friend who was a physician about how Huntington’s Chorea ran in my family and what a hard disease it is. He responded with, “Carol, hard doesn’t’ begin to describe it, mean is the word I would use”.
I have a vivid memory of when my Mom was at the point where she knew she was losing her thoughts and fighting so hard to keep them. I remember seeing the sheer terror in her eyes. And then, most horrible of all, I remember praying that she would actually lose her mind so she didn’t realize what was happening to her and she wouldn’t have to be scared anymore.
If I test positive, I know exactly what my death sentence is. My personal choice is to not get tested and live and plan as if I do have it. That way, I’ve taken care of the financial and care issues my husband may face, but I’ve lived a good, full and happy life. If I don’t have it – those years with my family will be a bonus!
My biggest regret in life is also my biggest joy – having children. Joy, because they are the loves of my life – Regret, because I may have passed this gene on to them. And yet, my fear paralyzes me from getting tested.
I’ve seen up close and personal how this disease pillages lives and families. I cannot change the past and I may not see a cure for my generation, but I damn sure am going to work hard for one for my children and generations to follow!
Please join me in this fight in whatever way you feel you can.
Thank you, Carol Smith
Go Team Dorothy! (my Mom)
The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports:
• 54 volunteer led Chapters & Affiliates
• 41 Centers of Excellence
• 65 Social Workers
• 160 Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
Please walk with me by joining my team and help make a difference! If you cannot walk with us, please consider making a donation to our team fundraising page by clicking the ‘Donate’ button at the top of this page.
Thank you for your support!