Huntington's test

[diamondmoon]

I saw genetic doctor on Friday and she very concerned I could be showing signs for Huntington's. I having blood test tomorrow. I am only 40 year old and feel very scared. I am a single mum with 8 year old and 12 year old and no support near me.

I am so sorry to hear your news x

I have Huntington's too - was diagnosed in October last year - I stopped driving the day of my results. DVLA took more than two months to decide what was to happen with my driving licence before telling me it was revoked.
My grandfather, aunt and dad all died from it - both my sister and I were diagnosed last year.

Thinking of you and hope you find the words to tell your children x

Hiya bent big hugs too to you I'm so sorry you have this too
I have 2 sisters. Untested xx

Hi bent I sorry u suffering as well.
Why did u stop driving?

Sixpencenonethericher - thank you for the hugs much appreciated.

I am a single parent like you - between us my sister and I have four children who are now all at risk too.

In some ways I was relieved by the result - I knew something was wrong and at least huntington's is not an unknown illness in my family and we know where to turn for help x

I've got a daughter at risk my sister has 3 xx

How old are u? And how old are your kids? Do they know xx

We filled in the form telling dvla as legally notifiable. They had the option of sending me for a medical driving assessment then giving me my licence for a fixed period but in the end based on consultants report they asked for my licence back straight away.

It took about two months - I could have driven while they made their minds up but I was worried it would be at the back of my mind and make me more prone to mistakes x

My doc said she will put I ok to drive still at the moment. Do u have many symptoms? Xx

I'm so sorry to hear it was not good news.
The support from Mumsnetters will help you, as some have walked your path.
Thinking of you and sending you good wishes and hoping for miracles.

diamondmoon, I am 41 and my son is 17 - he is very focused on the research that is going on worldwide and convinced that I will be ok once the results are trialled in humans.

Let's pray he is right! X

Do u work? X

My specialist nurse told me that this is the best time to be diagnosed with Huntington's Disease because although there is no cure they are about two years away from a treatment to silence the gene and stop the progression of the disease.

I work full time at the moment - office job 9 to 5. My employer is fantastic and as keen as I am for me to continue.

It would be a miracle if something can be done. Do u have many early symptoms? I had a gp apt last week and lost my balance getting up to examination table and fell back in to very cute gp!!

I used to work for a university that was doing very pioneering work in regard to Huntingdons disease. I don't want to go into too much detail as animals were involved but there is lots of work being done and there is definitely hope.

sleep that is brilliant and so promising

Actually I've just googled and there is some reporting on the university website so I'll link to it www.cam.ac.uk/subjects/huntington's-disease

I used to look after the sheep and they were gorgeous.

Would be amazing if it happens x

SleepFreeZone, thanks for sharing this (I already knew, but it's great to hear it again). Hope is just around the corner for Huntington's sufferers.

💐

The link is not available x

I was trying to remember the professors babe who was behind the ongoing research. I found her whilst googling so if you put 'jenny morton huntington's disease' into your search engine you'll find some of the news stories regarding her work.

*professor's name

Found her thank you xx