Can we donate blood?

EricInLA

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Does anyone know whether we pALS are allowed to donate blood? There's a blood drive going on at our Temple and I'd kinda like to do it, but curious whether doing so would pose any risk either to us or the recipient. I still consume a normal diet and am good on swallowing so there would be no issue with me having a big breakfast before going over there.
 

richdees23

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hey eric.
that's a good question. one i took the effort (alot) to find out. i wanted to donate blood, so i signed up and filled out the questionnaire without any problems or issues. on top of that, i called them, told them my situation ( i have als and i take riluzole) and had them confirm that i was able to donate blood. so the answer is YES.

HOWEVER, in my case, i still was not able to give blood due to the fact i cannot breathe if i lay flat on my back. i assumed i would be able to sit up and donate, but after being redirected to two other locations looking for seated accommodations, a nurse in charge told me i cannot donate no matter where i go. the american red cross will not allow it because it puts my health in danger.

my advise would be to call first and give specific conditions of your situation before you travel to the location. even though pals on medication are allowed to give blood, there might be issues/circumstances specific to your case which exclude you from donating.

i apologize for the long-winded nature of this reply, but i spent months and three different attempts to be told i couldn't give blood.
very frustrating and disheartening.

i wish you success!
 

KimT

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Eric,
God bless you for wanting to do this. They would never take mine because my "normal" blood pressure is 90/50. After I gained weight, it went up to a whopping 100/60 but still, sometimes is lower. At one office visit it was 88/48 and I had eaten a full breakfast and was super hydrated. Go figure.
 

richdees23

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hey eric,
how'd things work out?
 

EricInLA

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It appears as if I'm eligible! I read the list of disqualifying conditions/medications and none of them pertain to MND. Our disease is so miserable that it doesn't even make the disqualifying list :LOL::rolleyes: So, I'm signed up for Sunday. Last time I did years ago, I passed out. It was around 2pm. They told me to eat a good breakfast, but they didn't say anything about lunch! OK, so I'm gonna eat one hell of a Sunday brunch before I cruise on over.
 

richdees23

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great! glad to hear it. best of luck!
 

KimT

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Eric, Super hydrate the night before.....even if you pee the bed :ROFLMAO:
 

EricInLA

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That’s good advice Kim. I will do that.
 

EricInLA

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Well people, I had to go to the blood donation site -- the gym at our synagogue -- just to have them REJECT me! :mad: Disappointing. Apparently ALS is on "permanent deferral" status for blood donation. (see chart). The nurse didn't have a good explanation for me, but upon further research it seems that because the cause of our disease is unknown, they can't be 100% certain that our blood is safe for the recipient. She did say "permanent deferral" didn't really mean 'permanent' - it's more like 'under review' by the FDA and blood donation could be possible at some point, but I sorta doubt it. I didn't even bother to ask if I still get the free ice cream certificate, though we could use it today - it's 111 degrees in Los Angeles.
 

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Nikki J

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Sorry Eric. Thank you for trying.
 

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really sorry Eric - you are so generous to have gone to such lengths to try - thank you 💜
 

richdees23

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aaarrrgggghhh!!! sorry to hear that eric. they really need to be more clear BEFORE the effort is made to donate.
 

Vincent

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I offered and was told that having a disease of unknown etiology disqualifies me, These are Canadian rules. I don't know other jurisdictions.
Vincent
 

Greerguy

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My wife has famial als and mayo clinic needs blood for research. I
 

Nikki J

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Greerguy that is a completely different issue but an important one. fALS people are much is demand for blood csf etc research donations. I have given countless vials of blood ( I think more than 200) over the years There are biomarker studies for SALS PALS too. with COVID many are on hold but people who are interested should check with their clinics and see what studies they have.

It is saving lives in a different way. think of it like this, almost anyone can give regular blood donations but the information researchers can find from the blood of PALS can’t be obtained from anyone but PALS
 
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