Hi everyone,

My name is Lauryn and I've recently become friends with a woman that has Huntington's Disease. Her husband told me about the disease, and I've done some reading on it as well. Everything I've read says that life expectancy is anywhere from 15-20 years after "onset" -- to my understanding "onset" means when symptoms become noticeable. However, this friend of mine with HD lost her mother, an aunt, and an uncle to HD and none of them lived past about 8 years from when they developed symptoms.

When I was speaking to my friend's husband, I told him I read that the life expectancy is 15-20 years after onset and he actually laughed and said there was absolutely no way. I know HD varies greatly from person to person and family to family, but the statistics have to come from somewhere.

I guess I'm wondering if I'm missing something...? My friend's husband says she will be lucky if she has 5 years left. Which will be about 8 years of symptoms. That's not even close to 15-20 years.

Can someone explain this to me? He told me her CAG count is 49...if that helps.

Thank you. Best to all.

I can only talk about my ex brother-in-law. He was clinically diagnosed at 35 with a CAG of 46. He died at 50, about 15 years later. My ex-husband was diagnosed with a CAG of 41 four years ago at age 52 and he is still living in his own apartment, leading a fairly active life but not able to work for the last three years. My guess is that the higher the CAG the faster the disease progresses. I am sure someone here can add to or correct me on that idea.

I think it is a general range for the "average" person with HD. In any average there is a wide variance.

I'd have to agree with ConcernedPartner: the higher the CAG = faster the disease progresses. JHD patients have very little time and older adults have more time. Put that together and you average 15-20, while some may have more and many have much less.

There is also the variance in how we view the term "onset." It is such a vague idea. HD begins the day you are conceived. The mutant protien is producing the extra huntingtin protein your entire life. The question of onset is when has it done enough damage to make it visible. Right now doctors determine onset by physical symptoms.

Problem: cognitive and psychological symptoms can occur up to a decade before ANY physical symptom can be detected. So, really what is onset??? Also some have very few psychological symptoms and others have extreme... It is such an individual disease. It all depends on how the extra protein kills the nuerons in the brain.

Bluedaisy, you are so correct. My uncle was diagnosed with mental disorders that were related to HD, we found out later. He was instituitionalized at 12. From there, he went in and out of the hospital until his death. He was never able to work. My mother started showing symptoms when she was about 50. My aunt did not show symptoms until much later, but both suffered depression many years earlier.