Huntington’s Disease is familiar to few, including most health professionals. It is a genetic brain disease that is passed along to 50% of its victims’ offspring. It is always fatal. There is no cure. When people ask me what HD is, I usually tell them to “take the worst features of Parkinson’s, Alzheimer’s, and Lou Gehrig’s Disease, combine them and you get Huntington’s.”
This is the real story of my daughter Allison, and her long battle with Huntington’s Disease. People with Huntington's live about 15 years from the onset of symptoms. Juvenile HD strikes before age 21. Its victims survive an average of eight years. Fifteen years into her battle with juvenile HD, Allison still possesses her precious smile and finds a reason to see tomorrow.
Toni, Allison's mom, died in 1993, shortly after her 33rd birthday. She was adopted, and there was no reason to suspect that she was at risk. Her native state of Massachusetts did not divulge her birth mother's medical history to her adoptive parents. When she became ill, it took a long time to figure out what ailed her. There was no test for HD at this time. The gene mutation that causes it was discovered by scientists at Massachusetts General Hospital in 1993, a month before Toni died.
Allison has fought with courage, dignity, and often humor, despite losing so much in her young life: her mother, most of her friends, and her dream to be a college professor. Many folks who should have helped her did not. We have learned to find our own solutions and forge our own way.
I have masked the identity of those who did not always serve Allison well, with the hope that they will do better for others. I am telling her story as a resource for other folks who are battling Huntington’s Disease and to bring awareness to those unfamiliar with it.
I hope that Allison’s story leads to a greater awareness of Huntington’s Disease and erases the misinformation and prejudices some have about this illness.