There are no words when talking about Huntington’s disease (HD) and Juvenile Huntington’s disease and the devastation it causes in a HD family for generations. It is truly the cruelest disease on the planet and causes great suffering and anxiety that can only be imaged if it is in your family.
Because children from a parent with HD have a 50/50 chance of inheriting the disease, approximately 200,000-250,000 live at risk for the disease. Since it is a rare disease, 41,000 American’s live with the disease and, unfortunately, it is progressive and has a 10-20 year prognosis.
A HD family deals with high emotional stress, financial devastation, anticipator grief for years, and multiple family members may have the disease at the same time.
The good news is that there are promising clinical trials being conducted around the world. I’m an Huntington’s disease advocate and my plea to you today is to pray the trials will have positive outcomes, and the U.S. Orphan Drug Act (ODA) will be requested and the FDA (Food and Drug Administration) will quickly approve it.
We Can Never Lose HOPE….