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 trying hard to act normal in front of my dd but getting upset once in bed. All I could think last night was I will not see my son turn 18.

Oh diamond as another poster said there is every chance you will see your children grow, there is some great research going on ( looked at the links shared ). I have cared for some lovely people who had HD and they thought the same as you but they did see their children grow.

How quickly did your clients get much worse? Did they stay home? My mum was in a home after 5 years

It was in a unit for people with HD so most were at different stages and in the 10yrs I worked there only 2 passed away. The clients only came to the unit once they couldn't be supported at home by their families but their families were able to visit the majority of the time and the unit was more a home from home and families were welcomed. Some had children 2 were quite young when mum first came but she did see them grow. HD is such a cruel disease but with new research and technology relationships can be maintained xx

It's still really scary though I hated seeing my mum so sick frail being fed and not recognising me so that's my fear for my kids

I know xx

I'm so sorry to hear you tested positive, OP. My dad has HD too. If you ever need a friendly ear, please feel free to drop me a message x

Sorry about your dad how is he doing x

Hi Diamond. Hope you are doing ok. My DSis was about 32 when diagnosed with an aggressive form of HD about 10 years ago. She is still with us today and is bearing up really well and enjoying seeing my Dniece (age 10) grow up. Life is not easy for her and she has needed help over the last few years but she is still able to enjoy things. She is far braver than I would be in the circumstances and I have so much respect for her.

You can do this! Sending all my love and positive thoughts

Thank you for your lovely positive message.x

Is that your sister? And it's her 10 year old?

Yes. My sister is early 40s now. Her daughter is 10. My sister knew of her positive gene status before she had her daughter and was able to avoid passing on the gene through PGD.

Is she still able to live at home? So your niece has grown up with it x

Hi Diamond. Yes she's still at home and yes my niece has grown up knowing nothing else. My niece is supported by the young carers group and has a monthly outing on her own with a specially trained carer who gives her a chance to talk about her feelings. The carer is fabulous. In fact all the healthcare professionals have been great. There is lots of support in my sister's area. Hopefully there is in your area too. How are you feeling today?

That is encouraging that your sister is still at home. I am going to call Huntington's association next week to ask what support available.
I feel bit better today my niece and brother are coming up today. And my ds is here for the weekend so nice to have a cuddle. X

Sorry to hear this diamondmoon looks like there is lots of support on here and I hope you receive it in real life too. Hope you have a good say today with your visitors.

Day! X

Hope you're feeling ok, op.
My friend's DH has completed a trial of "ISIS-HTT" and it seems promising. It would be a good thing to ask your specialist about. We have Kennedy's in my family; it's a horrible feeling waiting for symptoms.

I'm so sorry to hear your bad news. My mum was diagnosed nearly 3 years ago. And we have since found out her birth dad passed away from it last year. It is hard, you'll need people and support around you. Please feel free to talk/share if you need/want to

Yes will definitely ask my specialist is it a trial medication?
Thank for support everyone it means a lot. X

Yes it is, i think there have been several trials of it now. X

I couldn't get to sleep last night my body get having spasms. Really hope not an every night thing.
I worrying what will happen when I can't work and what I will be able to claim.

You can claim and apply for pip I think while your still working , I get highest rate for both parts and your HD team will help fill it in and also what else you can claim , I would of been able to claim more but I had a 2 year break from full time working and also my dh earned too much but that might change he's got a meeting tmrw to see if he's getting made redundant so I'm scared about that oh well

Oh no hope his job ok good luck tomorrow. I will speak to my doctor about claiming thanks. If I need help at home would I have to pay?