How many of you out there have ever heard of Huntington's disease? I've been on this earth for 28 years and I sure hadn't. I just recently learned that a disorder I never even knew existed would change my life forever.
On February 5, 2018, my dad was officially diagnosed with Huntington's disease. After months of inconclusive tests, scans, blood work, you name it - he finally had a genetic test done.
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. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. 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.
So what does that mean for my brother and I? Well, we have the option to get genetic testing done. This blood test will confirm whether or not we received the faulty gene from our dad or not. If we did, we will develop the disease at some point in our lives. Since we are both over the age of 18, it is solely our decision to have the testing done.
You may be wondering how we wouldn't have known that this could possibly run in the family? Well, my dad was adopted. He did not know his real parents or much of their family history. Without knowing this information, a doctor would not think to immediately test a person for HD or even think that it could be an option. Also, genetic testing for this disease just recently became available in 1993.
Thank you for visiting my personal fundraising page. With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones. Please register to walk with me and help make a difference. The walk will be on May 20, 2018 at the Naperville Riverwalk. If you cannot walk with me, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.
Thank you for your support. My family and I appreciate it more than you will ever know.
- Sara & Family (Aron - dad, Jeanette - mom, Joe - brother)