sorry guys for asking so many questions I just still have a lot to learn. I wanted to know what the average CAG number is. My mom and I both have 45 and thats the highest i have seen so far. my mom is the youngest person in our support group with hd and being symptomatic. shes 45 and everyone else is in thier fifties and up.

My daughter who is 27 and has been symptomatic for 6 years has a CAG of 60.

I don't have the actual number for the average but most people with the HD gene fall into the 40 - 50 range so I would guess 45 is average. The highest known count is 250.

CAG repeats are sort of a double edged sword. Generally the average age of onset is older when the CAG is low. 40 is the lowest with certainty you will develop HD. I would imagine there are more people with a 40 count than a 45. However CAG counts predict nothing for an individual. There are persons with a 40 and still get early onset and people with a 45 count that have later onset. Barb has a 39 and so does her father. Barbs onset was 20 years earlier than her dad's onset. So really having a 45 CAG count is no more than fun fact. You can't tell anything specific to you with it.

I would guess that people who are older and have HD can make it to the groups easier then younger couples... no kids in the house and stuff like that that keep lives busy.

My Husbands GAG is 45...he has had symptoms for 9 years...he is 46 years old now...were thinking he's in the early 3rd stage...Nila

I seem to remember reading somewhere that there were more people with a cag of between 44 and 46 than other numbers. Norma had a cag of 44 and become noticeably symptomatic at age 52. I say noticeably because on reflection she had bad balance for as long as I can remember, and now think perhaps it could have been attributed to HD. She passed away 3 years ago this week aged 60....take it easy...peter.

Snap Raven I'm 45 too. JHD will produce higher CAG's nearer 100 than 45.

[www.hdyo.org]

Alot like Nila...My husband has a CAG of 45 and is 45 1/2 years old. He also has had symptoms for about 9 years. And probably is in the Late Mid stage.

CAG count and age of onset is the million dollar question when a person is 1st diagnosed HD+. My PHD has a CAG of 45 and at age 43 is disabled by short term memory loss, balance issues, depression, loss of fine motor skills and cognative decline.

I had an opportunity to look at his medical records from his days in the service (he would have been in his 20's). Those records show treatments for unexplained falls, sleep troubles, depression, migrains, various accidents and some poor judgement calls. He worked a high stress job confined to a submarine for weeks at a time. I do think his symptoms started during this time.

After he left the service his symptoms never improved. He spent years looking for answers and his frustration increased his PTSD, depression and personal/relationship problems just to name a few. When he was finally diagnosed HD+ he felt relief. Relief to know there was a reason for the things that happened to him and that he wasn't "going insane".

Had he been diagnosed HD+ when he was younger he could have been more pro-active. All the unanswered questions all those years caused him so much stress and depression and the longer it went on the more severe it got.

Although CAG count is one factor in the HD puzzle, I also think stress and environment is another to strongly consider.

My son Tim is 30 w/CAG 51. Is disabled due to emotional and physical symptoms. My son Mike is 36 w/CAG 48 some symptoms but still works and takes care of his 3 teenagers. Mike was very distressed to find out that his # was so close to Tim's until I explained to him that each person travels their own HD journey and in their own time. He just got really hung up on the #, comparing himself to Tim.
My sons have always been very different people, Mike much more laid back, did well in school, etc. and it seemed Tim always struggled in school, had many accidents and injuries, took many risks with not much if any thought to consequences. He was diagnosed at age 5 with ADHD and needed much help getting through school.
So I don't really put much stock in their CAG numbers, I agree with Eric that it's just a fun fact.
Carla

Most of my life with HD was spent praying for a test rather than the tortuous course not knowing until you get HD. People seems to make a lot of mistakes along the road to knowledge. I was told by a shrink who specialized in HD locally that I was obsessive compulsive and making the whole HD thing up. When the genetcist told me my CAG was in the high 40's the first words out of my mouth were Fuck You Dr. Badu. The numbers 47 and 21 were sent to me in a letter.

We are not talking the darke ages or a 3 rd world country. The interpretations of the CAG's might have left many people thinking they do not have HD when in fact they do. IE anyone with a CAG of 38 or 39 who tested at CRedit Valley hospital Ontario was told they did not have HD. So what can you do about mistakes like that. The next crowd is interpeting CAGs and sees it as a joke, but realy the errors of the past simply have to be dealt with before the crowd moves to saying its nothing really. NHothing was what I had for most of my life.

Try this link

[hdlighthouse.org]