Why EDSers Can't Give Blood/Red Cross Rules

[Guest guest]

This is an excerpt from an Ehlers-Danlos Syndrome list I belong to. The person who posted this is the well respected, well informed list owner. Both she and her husband have EDS, as does her father. For that reason, she and her husband made the difficult choice years ago not to have children. I am printing this out to keep, because it is very valuable information and the first time I've seen it addressed; and because my son, (19) did in fact donate blood at a blood drive being held at his college last fall. He refused to believe me when I told him it was a risky and even foolhardy act, though I do understand the very good and altruistic reasons he did so. Hopefully, this information (not coming from "Mom") will help him to understand. I also share this because maybe it will help others out there as well.

Love,

~LoneStarRose~ (~~)Message: 2 Date: Sun, 16 Jan 2005 16:21:00 -0800 From: "Barbara J. Uggen-"

Subject: Why we can't give bloodThe subject has come up a few times over the years about whether or not people with EDS can donate blood. Ehlers Danlos is listed on the Red Cross list of conditions that exclude people from donating, but there's no explanation as to why.Last week there was a blood drive at our gym. Our gym is also running a workout contest in which we earn points every time we work out and for other healthy activities. If we signed up to donate, we earned 3 points whether they accepted us or not. After working out, mom and I decided to give it a try. She was allowed to donate and I was not because of my EDS. I asked the lady at the blood mobile why EDS was on the "permanent deferral" list (and I looked at it in writing). She said that conditions in the permanent deferral category or those in which it is in the best interest of the potential donor not to donate. There is nothing wrong with our blood, but donating may not be safe for us. My speculation is that the easy bruising and tissue fragility, poor wound healing, etc. is what eliminates us as donors. They make no distinction as to EDS type in the listing, so it may be perfectly safe for some of us, but they aren't taking any chances that we might have problems.-Barb