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Huntingtons?

Hi everyone

This might get a bit long but i hope i dont bore you!

I have 6 and half month old son and i just turnt 21, to give you a bit of background so you follow me still i was told by my mum and dad when i was 13 that my dad is not actually my biological father.It might sound horrible but it didnt bother me too much s we dont generally get on. Anyway my mum had a one night stand when she was 17 (her first time!) and fell pregnant with me, she met my dad (the guy that raised me) a couple months later and he wanted to take us on.So they told most the family that he was my dad as the one night stand, my mum later found out, was infact married with kids! So he doesnt know about me, although he did know my mum fell pregnant she said it wasn't his, heprobably wuldn't have cared anyway!

So to get to my main point, when my son was around about 2 months old my mum came over and was acting really weird, she proceeded to tell me my real dad is dying of huntingtons disease which incase you dont know can be passed down.I didnt even know anything about the disease until this all came out, my mum told me briefly that its a muscle wasting disease that on average if you have it starts to show its symptoms in your 30's.Basically if you dont die of something else you will just waste away, losing the abiity to walk,talk, move and swallow until your body actually stops working all together. Glamorous way to go isn't it? We made appointment to see my doctor as i had been finding things hard anyway what with having a new baby and being 7 miles out from friends and family and no transport to get anywhere other than the bus which is exspensive! My doctor says its 50% chance its passed down possibly even higher as its a very strong gene, theres no medicine or cure or anything for it (which i knew) and to be tested for it you have to be over 18 (so i have it my son cant be tested until he is 18) You also have to have 3 councilling sessions that are spread out over a year before you can have the blood test! So they refered me anyway and i just got my first appointment through a month ago its on the 15th october, not long now.I just cant believe i have to wait a year, well atleast a year, who knows how long it will actually be! Its like my life is on hold, im not ment to get pregnant until my test reslts are through and even then if im positive then i cant have kids without the risk of passing it to them. I wanted to go private but not sure if you can. I had quick look on the net but coldnt find anything.

Anyway i just wanted to share my story with you all and see if any of you have experience with this or know someone that has?Thanks for reading!

charlie x

Replies

  • Hi Charlie- I have nursed adults with this condition so can only share your worry as it is an awful disease. I'm so sorry you have this potential timebomb hanging over you but hopefully you will have missed the gene and be OK. I'd certainly look into going private for a test if you were thinking of having another baby soon as they can test early in the preg (I think) to ensure the baby is not a carrier.
    I have a friend who's partner has a life limiting disorder and I think she has been through similar to ensure a healthy baby.
    Best wishes xx
  • hi camlo thanks for your reply

    i spent most of the day reading up on it and its just driving me crazy!

    do you know if i can get tsted privately?my doc says i have to wait a year!

    charlie x
  • OMG Charlie. I'm so sorry. This is awful news. You probably want to know whether it's been passed on to Jay - why don't they test until 18?

    I'm afraid I don't know anything about Huntingdons but I really hope you don't have it. That's such a psychological battle as well to have to wait so long to find out if you have it.

    So sorry hon. Hope it doesn't get to you too much.

    Big hugs,

    Jo x x x
  • Hi jo

    im not really sure why they dont test until 18 i think its because its something that you will end up with if you have the gene and usually it doesn't kick in until late 30's so i suppose its all to do with being able to handle knowing you have it and if your really young i guess you wouldn't be able to cope with that? I really can't see myself being able to have a normal life if i do have the gene, its like a life sentence and a horrible way to die!

    charlie x
  • Hello Charlie,

    I'm really sorry to hear what you're going through - just when you think verythings tickng along so well, you get dealt this blow. I can't imagine how confused, hurt and angry you must be feeling and nothing I say will take away from that.

    I found this leaflet, which might help understand the testing procedure a bit: http://www.bshg.org.uk/leaflets_forum/leaflets/Huntingt.pdf

    I think one reason why it's not heavily advertised if you can be tested privately is due to the long procedure and the fact private care isn't big on the counselling side, which is what the majority of the test involves. Perhaps ask your GP. From reading the leaflet, they seem to put a lot of effort into preparing you for the results beforehand and this is what takes the time. One reason they might not be able to test your son until he's 18 is due to the arguments out there regarding children's rights on genetic testing for pre-symptomatic diseases - I think there's something that says individuals have to make the choice themselves. But I could be completely off the mark and it could be due to what you say about not showing signs until older.

    I don't know much about Huntingtons, but I have read that it's rare, so I really hope for you that if you do decide to be tested, it'll be one time that everyone is hoping for a BFN for you.

    Sending you big hugs at this worrying time.
    Hoping
    xxxx
  • hey

    just a quick update, i had first session with counselor for my testing and they have said i cant have it because i dont have solid proof that its in my family history, as i dont have contact with him. Anyway he knows now, decided to tell him after all these years and he has asked for a dna test which we are in the process of sorting out. I just want to get tested and get it out the way! Oh yeh i actually contacted his daughter first rather than him and she told me he hasnt been tested for huntingtons himself yet so its not definate that he has it. So i was misinformed there, as i was told he had been tested and was positive.It is in the family, his mother had it and some other family members but anyone that is still living has decided against being tested as of yet.

    anyway thanks for those of you that read my original post and gave me your support

    charlie x
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