1. tish

    tish Registered User

    Feb 8, 2011
    73
    Haven't been on for a while. I was hoping to never see this vile condition again but unfortunately we aren't that lucky. My sister in law died aged 36 with it and 2 years ago my niece/daughter aged 37 died with it. We are now informed that my nephew who at the moment is aged 36 has the same condition. It was like a giant bomb being dropped on our heads and I am petrified as what is to come. It seems that very young people with this condition don't get much in the way of help and support and neither do their carers. I can say this as we were carers for my niece and I don't think I have ever felt so lost at times as I did caring for her. With my nephew being young and not married we believe that we will be his carers to. We are involved taking him to UCL for genetic testing and research and hope and pray that they will come up with a cure. We realise it probably wont be anything to help my nephew but maybe his and my nieces children will have hope if they end up with the condition themselves, which we know is a 50/50 chance. Would love to chat with someone who is in perhaps the same position as we are and that maybe then, we could help each other through a very rough time ahead.
     
  2. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    How awful for you tish. We know that all forms of dementia are dreadful but your family is being laid waste by a particularly cruel disease.

    I have no experience of this but I do hope you'll get replies from people who will be able to share their experiences. As you suggest, you may be able to help each other.
     
  3. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Tish so sorry to read about your poor nephew. I do remember how lovingly you cared for your niece and the thought that you have to face similar again must be devastating. I hope that maybe through UCL you may be given all the support possible.
     
  4. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,490
    Female
    Near Southampton
    This is indeed a dreadful blow and so very, very sad. What a terrible time you and your family have had and are having with this disease.
    I'm afraid there is little to say of comfort but I hope that you will receive lots of support and that there will be an eventual cure resulting from the genetic testing.
    The sooner the better too.
    Sending sympathy but I wish it could be so much more. xxx
     
  5. tish

    tish Registered User

    Feb 8, 2011
    73
    Thank you Stanley for your kind words and yes I am hoping there will be someone out there. The only problem is that it is so rare so there aren't many out there the same age as my nephew. No one has contacted me yet but I live in hope. Take care of yourself and thank you again xxx
     
  6. tish

    tish Registered User

    Feb 8, 2011
    73
    Thanks Sue for replying. I am dreading what is to come, but we have been to UCL today and at the moment he is doing well, so on a positive note and as my son says 'be happy' and enjoy the good times while we have them. Each day is a treasure at the moment. xx Hope life is treating you well
     
  7. tish

    tish Registered User

    Feb 8, 2011
    73
    Thank you Saffie for your kind words. I am hoping this time, having been through it before that we will be a little wiser and more aware of what we will be needing before it happens. I don't think this time I will sit back as much and just accept the poor offer of help we had. This time I will be shouting a little louder for them to hear me. Thank you again for replying and hope life is good for you x
     
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,713
    Female
    Dundee
    Oh Tish. How incredibly sad. Can only send my wishes for strength for you all.
     
  9. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Do shout tish, you shouldn't have to I know but it's a fact that the squeaky door gets oiled first - help is out there, more or less, but it rarely comes to you, it should but it doesn't so ask, demand, insist and push and hopefully that will get you more support. Deepest sympathies that you and your family find yourselves in this awful situation once again.
     
  10. 2jays

    2jays Registered User

    Jun 4, 2010
    11,477
    West Midlands
    In the mists of my memory I seem to remember reading about a support group for people and carers of eofad on TP where families met up regularly

    Maybe it was from you Tish.

    I'm trying to do a search to find the thread, but so far I'm unsuccessful. Hoping someone else who joined TP at least 4 years ago will be able to find the thread.

    As far as I can remember, the area that people met up was London. Even though it wasn't necessarily local, I seem to remember people from far and wide "looked forward" to meeting up.

    any genetic disease is awful. This one, eofad, in my opinion, is horrific. My OH has a debilitating neurological genetic disease that our children and grandchildren have inherited. A 50/50 disease that in our family is 100%. Not necessarily helpful for you to know that. Hopefully you will know that my heart goes out to you xxxxxxx


    Sent from my iPhone using Talking Point
     
  11. Essie

    Essie Registered User

    Feb 11, 2015
    566

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