When we have Sjogrens are we allowed to donate our organs after we shuffle off our mortal coil? Just wondered and couldn't see anything on the board about it.
I was told that I could not donate anything because of my AI disease.
Oh, wow - I hadn't even thought of that. I'm registered as an organ donor :(
I can't donate blood or body parts due to Lyme and babesiosis. Nobody would want any of that from me!!
Probably the only thing we COULD do, is donate our body to science.
Wouldn't that open their eyes to Sjogren's?! :o
Bucky
Wow, that would be so disappointing. I am a registered donor and have a good strong heart, lungs, etc. I want to help someone in need when I go to heaven, you know, in like 40 years!
We could probably donate but it would be only for research/scientific purposes.
I believe that we can't donate our organs and I know that we can't give blood. I know that we could donate our body to science but my hubby told me that no way would he let anyone cut me up!!!! At least he will look after me after I am gone! Irish ;D
Im with Irish...I was told that from all the medications and especially the Rituxan, we would not be able to. I would never give blood...that is just nuts.
Gursie
Wow, that's something I've never thought about! I've been listed as an organ donor for years, but then up until 3 years ago I thought of myself as extremely healthy.
Does anyone know if this is absolutely the case for all of us?
I tried to register as a marrow donor and was told that because I had the AI disease Fibromyalgia, I could not donate marrow or blood.
i did a little research and found that we can't donate blood and/or organs. We can, however, donate our bodies to science in hopes of finding the cure of some dread disease.
If I can talk my hubby into it, I would like to donate to Science. My understanding is that your surviving spouse/family will receive the cremated remains (not used) in about 4 weeks. I plan to be cremated anyway; so, can't see that it would be much different - other than how family members feel.
As for me, when the time comes . . . I'm going Home to Jesus and getting a brand new body that won't deteriorate/decay. If I can help anyone have a little easier life physically after I am gone, I would consider it an honor.
Jorja
I donated blood several years ago.....what if I had SJS then but didn't know it. From what I've read and docs have told me...I may have had this for 20+years! When you donate blood do they do further testing on it and I wonder how deep into testing they go??
Gold, that has been one of my concerns. I donated over 8 gallons. I am missing the rejection factors so every time there was a transplant it seemed I was called in to donate. I did not know that there was a problem with AI diseases. I sure that the donations did help to save lives.
Yeah Joe, I guess if i look at the big picture....it was probably good that I donated back then.
Interesting replies folks. I used to donate blood before I got Fibromyalgia. (which I did not realise was AI) Have not felt well enough to donate for quite some years now.
I didn't think we could donate blood. Its a touchy subject with me anyway. As a gay person we aren't allowed to donate blood. Just being gay disqualifies you. The ban was recently lifted but for only those that haven't had sex in a year.
Fibromyalgia is NOT an AI disease.
Hi :)
In the UK I am definitely NOT allowed to donate blood. After being dxd with Hashi's - and telling the blood donation service about it because I'd been a regluar donor since the age of 17 - I got a thank you letter from them and a little badge and the letter also said they would not be wanting my blood any more.
I want to donate my body to medical science but I'm not sure how to go about it. I'm beginning to look into it. I've no interest in having a 'final resting place'.
Take care - Scottie :)
As long as your medical history is available to the physicians involved, I would just stay on the donation list and let the experts make the decision. There are many parts of the body that can be donated, ranging from skin to tendons to corneas to bone -- everything but the voice, so to speak.
Of course, if there is someone collecting bodies with autoimmune disease for research, that is a good thing to do, too.
"People of all ages may be eligible to donate organs and tissues. Your medical condition at the time of death will determine what organs and tissues can be donated."
http://www.mass.gov/rmv/license/organ_donorFAQs.htm
"Don't rule yourself out [for organ donation] because of any health condition including diabetes, high blood pressure, cancer, or because you may not be eligible to donate blood. Eligibility is determined on a case-by-case basis at the time of death." http://www.yesutah.org/content/about/faq#faq2
As for blood donation, the decision belongs to you and your local blood bank. The Red Cross's official position is that people with Sjogren's can donate, though some locals say no anyway.
From the Lupus Foundation of America (b/c what applies to lupus usually more or less applies to SJS) (http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=604&zoneid=76):
Each blood donation service will have their own set of guidelines for eligibility, so be sure to know the guidelines of the donation service you intend to use. According to the American Red Cross, while a diagnosis of lupus was at one time a disqualifier for the donation of blood, this is not longer the case. The Red Cross will allow those with lupus to donate even while taking such medications as Plaquenil and/or Corticosteroids. In contrast to the Red Cross, the National Institutes of Health (NIH) will not accept blood donations from those with lupus. Their thought is that without a full understanding of the causes of disease like lupus and the role of antibodies, they can not ensure that there is absolutely no risk of transmission of harmful elements to the other patients.
From the Red Cross (http://www.redcrossblood.org/donating-blood/eligibility-requirements/eligibility-criteria-topic):
Most chronic illnesses are acceptable as long as you feel well, the condition is under control, and you meet all other eligibility requirements.
Also (http://www.redcrossblood.org/donating-blood/eligibility-requirements/eligibility-criteria-topic):
In almost all cases, medications will not disqualify you as a blood donor. Your eligibility will be based on the reason that the medication was prescribed. As long as the condition is under control and you are healthy, blood donation is usually permitted.
The rules in the UK are different.
I'm an RN who works for a blood bank and we take Sjogren's as long as the donor is feeling "well and healthy" on the day of donation. All of the usual meds we take are also not a problem.
Quote from: Bucky on December 23, 2011, 03:08:15 PM
Probably the only thing we COULD do, is donate our body to science.
Wouldn't that open their eyes to Sjogren's?! :o
Bucky
I've already done that, in my will. The Anatomy Class here I come!
Soycoffee
Quote from: DragonflyC on December 26, 2011, 06:50:35 AM
"People of all ages may be eligible to donate organs and tissues. Your medical condition at the time of death will determine what organs and tissues can be donated."
http://www.mass.gov/rmv/license/organ_donorFAQs.htm
"Don't rule yourself out [for organ donation] because of any health condition including diabetes, high blood pressure, cancer, or because you may not be eligible to donate blood. Eligibility is determined on a case-by-case basis at the time of death." http://www.yesutah.org/content/about/faq#faq2
As for blood donation, the decision belongs to you and your local blood bank. The Red Cross's official position is that people with Sjogren's can donate, though some locals say no anyway.
From the Lupus Foundation of America (b/c what applies to lupus usually more or less applies to SJS) (http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=604&zoneid=76):
Each blood donation service will have their own set of guidelines for eligibility, so be sure to know the guidelines of the donation service you intend to use. According to the American Red Cross, while a diagnosis of lupus was at one time a disqualifier for the donation of blood, this is not longer the case. The Red Cross will allow those with lupus to donate even while taking such medications as Plaquenil and/or Corticosteroids. In contrast to the Red Cross, the National Institutes of Health (NIH) will not accept blood donations from those with lupus. Their thought is that without a full understanding of the causes of disease like lupus and the role of antibodies, they can not ensure that there is absolutely no risk of transmission of harmful elements to the other patients.
From the Red Cross (http://www.redcrossblood.org/donating-blood/eligibility-requirements/eligibility-criteria-topic):
Most chronic illnesses are acceptable as long as you feel well, the condition is under control, and you meet all other eligibility requirements.
Also (http://www.redcrossblood.org/donating-blood/eligibility-requirements/eligibility-criteria-topic):
In almost all cases, medications will not disqualify you as a blood donor. Your eligibility will be based on the reason that the medication was prescribed. As long as the condition is under control and you are healthy, blood donation is usually permitted.
Interesting - thanks for looking all that up. I'll let my family know if there is someone who can use it and want it when I go, they can have it!