Can I donate myself to research?

Discussion in 'Welcome and how to use Dementia Talking Point' started by lardycake, Aug 29, 2015.

  1. lardycake

    lardycake Registered User

    Aug 29, 2015
    2
    Hi,

    My grandmother died of early onset alzheimers and my mother died when she was too young to display symptoms even for the early onset form.

    I am 27 years old and the way I see it is that with the knowledge I have available to me there is a 25% chance that I have early onset alzheimers. If my mother did have it then that is 50%.

    I have pretty much already come to terms with this and at this point would like to donate myself to any research if that is possible?

    I believe that I could be valuable because there is a high chance that I have the disease while still being early enough to not display symptoms.

    I am willing to have anything done to me, take whatever drugs, stick stuff in my brain, I don't care. I don't need payment or anything, I will do it for free minus travel expenses. I would prefer to do this instead of just donating money.

    Is there any interest in a subject such as myself somewhere?
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
  3. Aragorn

    Aragorn Registered User

    Jul 23, 2015
    18
    And sign up for BRAINS FOR DEMENTIA RESEARCH - google it. (you don't donate until you've finished using it)
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,661
    Salford
    Hi Lardycake, welcome to TP
    I don't know where you get the figures of 25 and 50% from but they're way out of line with anything I've ever read. My wife was diagnosed around 55 and naturally our 3 children looked into this quite hard (2 are nearly at the end of medically related PhD's and one a degree in biology the other in organic chemistry) and they decided the risk was so small they'd be better off taking more care crossing the road as there was much more chance of dying that way.
    Your grandmother did have it, your mother you don't know, from the fact sheet (link below):
    The prevalence of the defective versions of these genes is as follows:
    1. More than 80 known families worldwide have a mutation in the APP
    2. Nearly 400 known families worldwide carry a mutation in the PSEN-1 gene
    3. •Only a few dozen known families (mainly resident in the United States) have a mutation in PSEN-2 on chromosome 1
    4. It is important to note that these mutations are extremely rare and account for fewer than one in 1,000 cases
    Honestly you've more chance of wining the lottery without eve buying a ticket.
    The real risk is the psychological damage this irrational fear can do to you, I had a brother die of cancer at 48 and one from heart disease at 49, I can't afford to worry about that I just take care of myself and get on with life. Is it possible you can get some help and talk this through with someone before it takes over your life.
    Just so you know if you do volunteer for a trial may are "none interventional" so even if they found something they wouldn't tell you or your doctor, in order to preserve the integrity of the trial they just decide what they thing will happen then see if it does, you're just a lab rat, it may or may not get you access to some new medication.
    Take care Lardy and talk to someone.
    K

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=168
     
  5. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    Oh lardycake, I feel sad and horrified that you say you don't care what's done to you. I don't really know about the figures you quote and understand that when a close relative has dementia then inevitably most of us wonder about an increased risk to ourselves (I certainly do), but those figures you quote seem inordinately high to me.

    Before you go down this route (and it's highly commendable) please do talk to your GP and tell him how you're feeling. You're only a bit older than my daughter and I'd be dreadfully upset if she was thinking along these lines instead of making the most of her youth and enjoying life to the full.

    Best wishes x
     
  6. lardycake

    lardycake Registered User

    Aug 29, 2015
    2
    Thanks for the info guys :)

    Just to quote the link posted by Kevinl:

    "On average, half of the children of a person with one of these rare genetic mutations will inherit the disease."

    So the numbers really are that bad :(
     
  7. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    #7 CollegeGirl, Aug 30, 2015
    Last edited: Aug 30, 2015
    Only if you have the rare genetic mutation. Goodness, I sincerely hope that you don't.
     

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