Huntington Disease Lighthouse Families

Hi all,

I've been visiting this forum for almost a month now, and finally I decided to make a profile. I have appreciated all of your stories and I have so much respect for everyone here.

My best friend has HD and hers is progressing FAST. She started developing noticeable symptoms about 3 years ago, at age 28, and now at age 31 she can barely walk at all, occasionally has coughing fits to keep from choking on food, and has trouble keeping weight on. Several of her family members, including her mom, have passed away from HD. Not only that, but all of them have died within about 7-8 years of developing noticeable symptoms.

Can anyone relate to the fast progression of the disease? I have read so many stories on here, truly heartbreaking, but find many of them hard to relate to because some people say their loved one has dealt with symptoms for 10-15 years and there's no way my friend has that long. I've spoken to her family members and they have all told me she'll be lucky if she has 5 more years.

It would just be nice to know if anyone can share some insight into the fast progression of the disease. My friend's CAG count is 49...if that helps. I just see statistics like "patients usually live anywhere from 15-20 years" and I can't seem to relate because my friend is progressing SO fast. I worry so much and would just like some support...thanks everyone.

Prayers to all.

Caitlin

Hi, Caitlin,
I'm sorry for you what your friend and you are going through. I really don't know why your friend would be progressing so fast, only to say that each person is different with HD. My son's dad started developing symptoms in late 20s and passed away when he was 46, with a CAG count of 53.

You've come to the right place for help and information, so welcome to the forum!

Michelle

Hi Caitlin-
I'm just curious, is your friend the same friend as Lauryn's from a previous thread (Questions about HD) ? Your questions and the facts are identical. A lot of people took part in that and related threads so you might want to go back and read it!
Howard

Hi Caitlin,

Your story sounds very familiar. I have a close friend that developed noticeable symtpoms at age 27. She is now 31 and in a nursing home. Her CAG is 51. Her symptoms sound a lot like your friend's. Research has been done on the correlation between CAG counts and age of onset and in general, the higher the count the earlier the age of onset and the quicker the progression. However, it varies by individual. Each case is different.

I keep my hopes up that a cure for HD will come soon enough to give her a normal life. There is so much promising research going on right now. Keep the faith!!

I have had experience with this disease since so many relatives have it or now died from it. I just found out I am in the beginning stages. My cousin developed it in the thirties and lived about seven years. The Dr. told me since I am past 65 now, I won't have a shorter life than she because of my age.