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JJ-Knitter

Organ/tissue Donation

4 posts in this topic

Hi Everybody,

 

Does anyone know what the 'official' position on organ/tissue donation is for scleroderma patients? I know that for people who lived in UK during a certain period of time or for any length of time, they can't give blood or tissue (Mad Cow Disease concerns), but apparently organs are OK because they are 'life-saving'.

 

JJ-Knitter B)

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Hi JJ Knitter,

That's a good question! We have a whole section on the issue of organ donation for scleroderma patients

Or, better yet, start at Postmortem Overview which includes organ donation but also covers issues like autopsy.

Unpleasant topics, for sure. But all of us face end-of-life issues, either sooner or later (hopefully, a lot later!).


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I went to my local blood bank. they said I can't give blood. my doctor said I should go there to get my blood typed... he didn't want to do it because he didn't have labs that required typing, so he suggested a blood bank. But since they won't do it I guess I'll never know.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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JJ,

As part of the checkin process for my recent ablation I was asked if I was an organ donor. I told them yes, but my organs probably couldn't be used due to scleroderma's affect on them. She said that my skin would be very valuable since it hasn't been affected. We have a big burn center here so she said that skin grafts are always needed. So I'm keeping the organ donation thing on my liscense.

 

Shelley -thanks for the info on cadavar donation. That was something I was considering, but no longer.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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