HD Blog

There are no absolutes with Huntington’s Disease. Even if you inherited the gene it doesn’t mean you will die from the disease. It is no longer a sure thing that Huntington’s Disease will do to this generation what it has done to generations past. Researchers and Doctors are now finding ways to slow down the disease and technology is rapidly solving the riddles of the disease and barriers to delivering a cure. The general consensus is now that an effective treatment or cure is less than ten years away.

“So,” you might be saying “then you don’t need to worry about discrimination!” And should you say such a foolish thing you would be wrong. The specter of genetic discrimination is killing people now. It’s clear that there are things that those with “the gene” can do with the help of their doctor to help them keep their health until the treatment/cure arrives. Instead they hide their risk from their doctors and those around them in order to protect themselves from losing their insurance or losing their job.

There are thousands of people living their lives believing they have the gene and they make their decisions accordingly. Some never pursue a career, others never save for retirement, and many avoid getting into relationships. I know several people who’ve lost their jobs and/or their insurance and I know many, many more who live in fear that they will be “discovered”. These are the real costs to genetic discrimination and it can end with the House passing the Genetic Discrimination bill.

Go to the HDSA San Diego website and read this article from “Anonymous”. His wonderfully written story shows the costs that are paid everyday by the HD community. Here are some highlights (thanks to Anonymous!):

“Hiding this painful predicament became a sad and wrenching experience… I have learned to put on a mask. It suggests that my life is just fine, when beneath the surface I worry constantly about my future, my mother, my child, and my wife. I often feel like crying out for help, but know that doing so could have serious consequences.”

“Hiding has so pervaded my life that sometimes HD no longer feels like a real threat. I tell myself, “It’s just a bad dream!” But at other moments it becomes agonizing to have to lie. I sometimes find myself growing resentful of others’ relative tranquility and freedom to express themselves.”

You can make a difference, read the entire article here, then call or write your representative in Congress and tell them why they need to vote for this bill. This tragedy doesn't have to continue!