I Match 4 yr old girl, NMDP won't accept me

[Karenlynn]

Hi, I was informed in April/May 2010 that I matched a 4 year old girl but they wouldn't take me because I have fibromyalgia (not contagious). They say they are concerned it would harm me. I told them I would sign a release form and they still wouldn't take me. I am Mexican, Indian, German, Irish, French and Jewish. When I registered (National Marrow Donor Program) they said it didn't matter. Did they change the rules about having fibromyalgia? I have no idea how to use this forum. I do not know what Submit New Thread means!

[Neil Cuadra]

I asked somebody from the National Marrow Donor ("Be The Match") Program about their rather strict requirements, but not specifically about fibromyalgia. They told me that "doing no harm" is a top priority so they don't want to take any chances with donor health. I don't know why you got inconsistent answers. I wonder if they have specific written guidelines about fibromyalgia that they could show you.

If you want to pursue it, I suggest that you ask your own doctor if donating would harm you. If not, get a letter from him or her and send it to the NMDP as an "appeal," to see what they say. Were they talking about a bone marrow donation? If so, ask your doctor if a stem cell donation would be safer.

Personally, I think they go a little overboard in the safety-of-the-donor direction without considering the small risk on the donor side against what might possibly be the last chance for the recipient. If the recipient has other options, it probably wouldn't be worth risks to the donor, but how many Mexican, Indian, German, Irish, French, Jewish, matching donors could they have?

A NMDP representative told me that they won't accept a person in fantastic health who happens to be over their donor age limit, even when he or she is the only match for someone. I wish they were more flexible about it.

I suppose that an unfortunate outcome for a donor would produce bad publicity that could scare off other donors, but I also think that some of their rules are out of date.


By the way, you used the Marrowforums forum system properly. "Submit New Thread" means "start a discussion", which is what you did.

[Karenlynn]

Thank you for your reply. Thank you for your suggestion to get a letter from a doctor. A good idea! I don't know the difference between a bone marrow and a stem cell donation. I thought there was only one way they took a donation - by bone marrow. I also wanted to mention that when the NMDP sent me a overnight FEDEX, the deliverer placed it UNDER my doormat. I only found it by accident. He probably thought there was something valuable, like money, in it. I suppose that is why the NMDP calls as well. A wise precaution. I do genealogical research and I'm 2 differents lines of Pueblo Indian, Navajo and related to the last Commanche chief Quanah Parker because his mother Cynthia Ann Parker was kidnapped and she married the second to last Commanche chief. This was made into a movie (probably without much accuracy) titled "The Searchers" with John Wayne.

[Neil Cuadra]

Bone marrow donation is surgical and requires anesthesia. They draw marrow out through your pelvic bone. Stem cell donation is like donating platelets, except that you get injections of Neupogen for a few days beforehand, to stimulate blood cell production and get stem cells into your bloodstream, so they don't have to go in surgically.

There are good descriptions of both procedures at the NMDP "Be the Match" site:

Bone marrow donation process

Stem cell donation process