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Sjogrens Topics => Living With Sjogren's => Topic started by: Bernice on July 18, 2009, 07:52:55 AM

Title: CAN WE DONATE BLOOD??
Post by: Bernice on July 18, 2009, 07:52:55 AM
I don't know, this may be like a crazy question, but for some reason the thought came to my mind yesterday. I don't have plans, but would like to know for the future. There are some autoimmune diseases such as HIV and Hepatitis C and maybe some others I am not aware of that will prevent one from donating.

If anyone knows the answer please give answer. If this is a dumb question, please forgive!

Peace & Be Blessed!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: navydad on July 18, 2009, 07:56:04 AM
I dont know why we wouldnt be able to give blood I think they check it pretty good for HIV and other stuff,, but I bet alot of stuff still gets through,, I have to have two units of blood for my surgery thats coming up,, My boys are considering giving blood for me,, or I;m going to give my own blood
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 18, 2009, 08:02:27 AM
Navydad,
I mean can we donate to others???
Title: Re: CAN WE DONATE BLOOD??
Post by: lighthouse33 on July 18, 2009, 08:46:29 AM
The answer is no.  Check out this hyperlink:

http://arthritis.about.com/od/arthqa/f/blooddonation.htm

Title: Re: CAN WE DONATE BLOOD??
Post by: ruby52 on July 18, 2009, 09:16:42 AM
I did not know that!Thanks for the question and the link.You learn something new everyday.
                                                           Ruby
Title: Re: CAN WE DONATE BLOOD??
Post by: Crabcakes on July 18, 2009, 10:11:25 AM
Blood banks don't test for lupus or Sjogren's. It is because of the drugs and condition of your red (microcytic/small or anemic) and white cells that you may be rejected. I worked for many years in a blood bank. The blood is screened for HIV and most hepatitis, along with CMV. The blood can't possibly be tested for EVERYTHING!

Two interesting, and very rare, cases come to mind, many years ago. A hospital director was given two units of blood, and died of malaria from the transfusion. Even though the donor had not traveled out of the country in the previous three years (As asked on the screening application then) he had been carrying the dormant malarial parasite for many years, and it was transmitted to the patient!

Not a transfusion story, but, a park ranger had died, and he was an organ donor. His corneas went to a patient, who dies of rabies! The ranger had contracted the rabies virus (which has an affinity for corneal tissue) and passed it on to the cornea recipient.

Anyway, blood banks do a heck of a job keeping the blood supply as safe as possible!
Title: Re: CAN WE DONATE BLOOD??
Post by: Poochie on July 18, 2009, 10:24:30 AM
We shouldn't donate blood, nor should we donate organs.  Not that any of us are anxious to do so, but my rheumy had me remove my Organ Donor from my driver's license. 

Pooh
Title: Re: CAN WE DONATE BLOOD??
Post by: lynnmarie219 on July 18, 2009, 11:12:35 AM
I am still listed as an organ donor...I guess I better have it removed....that's kind of sad to me...I wanted to be able to give to others what they might need for organs etc. after I am gone....but I don't want to give people more problems because of my autoimmune issues!  :'(
Title: Re: CAN WE DONATE BLOOD??
Post by: Scottietottie on July 18, 2009, 12:27:25 PM
Hi

I used to be a regular blood donor but got 'struck off' when the autoimmune stuff raised its ugly head. I got a little badge, a thank you letter and a certificate but they definitely don't want any more blood.

Take care - Scottie
Title: Re: CAN WE DONATE BLOOD??
Post by: Pisces24 on July 18, 2009, 01:19:57 PM
I didn't think we could donate.

BUT everytime I see a dr he wants at least 5 tubes of the stuff.   
I do not know what drs do with the leftovers?? Do You?  LOL  ;) :D
Title: Re: CAN WE DONATE BLOOD??
Post by: Spring on July 18, 2009, 01:40:31 PM
I have donated with no problem, and I told them up front about the Sjogrens. I called before I went in the they double checked when I was there. I even donated platelets a couple times. I advise you to contact your blood bank-they will have a list.
Title: Re: CAN WE DONATE BLOOD??
Post by: Linda196 on July 18, 2009, 03:08:41 PM
Canadian blood services reject donors who have autoimmune disease diagnosed by positive antibodies, because they can cause problems with cross matching and/or set up reactions in the recipient. They also reject any donors who receive steroid treatment, chemotherapy, or biologic therapy like Enbrel, because of the possibility of reactions in the recipient. The same antibody guidelines have been proposed for organ donation, but not the drug ones.

Incidentally, HIV and Hep C are immune system diseases both resulting from viral attack on the immune system, They are NOT autoimmune.
Title: Re: CAN WE DONATE BLOOD??
Post by: hollyvad on July 18, 2009, 06:20:55 PM
This was a great question to ask, and from the response, there seems to be many thoughts.  Personally, I think I will keep my blood to myself.  The thought of donating it and putting someone in jeopardy is awful.   
Title: Re: CAN WE DONATE BLOOD??
Post by: irish on July 18, 2009, 08:35:26 PM
My understanding is also that we are not to donate. I called and asked at a center one time. Also. know how autoimmune diseases are I can just see going into a flare from the stress of donating blood.

Also, HIV is a virus and Hepatitis is also generally a virus. There are some hepatitis that is related to autoimmune diseasee but that one is not transmitted through transfusion to my knowledge. Hepatitis can be caused from other issues also---I think as a secondary infection. People that have typhoid fever will end up with hepatitis. I think that is the disease. Linda will know!!! Irish ;D
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on July 19, 2009, 06:41:09 AM
According to the Red Cross criteria, it looks like we are OK to donate if not flaring:  http://www.redcross.org/portal/site/en/menuitem.d8aaecf214c576bf971e4cfe43181aa0/?vgnextoid=c984510f935ea110VgnVCM10000030f3870aRCRD&vgnextchannel=e081912c9973b110VgnVCM10000089f0870aRCRD

They list diabetes as OK if controlled, and type 1 diabetes is an autoimmune disease.

I've heard, though, that people with active antibody activity shouldn't donate; I can't find anything to confirm that, so it might not be true.

Also, as for organ donation, it shouldn't hurt to have it listed on your license.  If you don't have any organ damage, you might still be able to donate (e.g., my SJS doesn't affect my kidneys, liver, etc. as it does some people's).  They decide on a case-by-case basis.  While there is some risk of transferring the disease, the life saving effect outweighs that most of the time.  I would check with your rheum before having it removed from your license.  I think that some of us shouldn't, but it's probably fine for most of us.
Title: Re: CAN WE DONATE BLOOD??
Post by: Crabcakes on July 19, 2009, 07:20:45 AM
I don't think anyone here is calling HIV and Hepatitis autoimmune diseases, unless I was misunderstood when I stated that blood banks test for such diseases. I never implied that they, nor CMV, were autoimmune diseases.

Scottietottie, I can tell you the docs NEVER see your blood. The tubes of blood that are drawn from you are tested, and then stored in a refrigerator for about a week (each lab varies on how long they hold the blood). Then at the tubes are placed in a biohazard bag lined bucket/trash can, and incinerated. *POOF*   Gone to ashes!

Title: Re: CAN WE DONATE BLOOD??
Post by: lighthouse33 on July 19, 2009, 08:32:06 AM
My mom has had cercial cancer which is caused by HPV, human papilon virus.  So, I can assume that she can't donate anymore either?  That's too bad, because she has O blood. 
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on July 19, 2009, 11:18:43 AM
Crabcakes, the original poster in this thread referred to HIV and Hep as autoimmune diseases.  A lot of people make the same mistake, which can be frustrating but I guess is understandable.  Those illnesses certainly get more press than autoimmune diseases, so I think they come to mind for a lot of people when they hear about immune system illnesses. 
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on July 19, 2009, 11:22:52 AM
Lighthouse, the Red Cross site states, "Eligibility depends on the type of cancer and treatment history. If you had leukemia or lymphoma, including Hodgkin?s Disease and other cancers of the blood, you are not eligible to donate. Other types of cancer are acceptable if the cancer has been treated successfully and it has been more than 12 months since treatment was completed and there has been no cancer recurrence in this time. Lower risk in-situ cancers including squamous or basal cell cancers of the skin that have been completely removed do not require a 12 month waiting period. Precancerous conditions of the uterine cervix do not disqualify you from donation if the abnormality has been treated successfully. You should discuss your particular situation with the health historian at the time of donation."

It also explains, "Chlamydia, venereal warts (human papilloma virus), or genital herpes are not a cause for deferral if you are feeling healthy and well and meet all other eligibility requirements."

So, I think it depends on how your mom's treatment went.  Is she feeling OK?  Has she been in remission for more than a year?  I hope so, for her sake and for the sake of anyone she might be able to help. 
Title: Re: CAN WE DONATE BLOOD??
Post by: lighthouse33 on July 19, 2009, 12:53:35 PM
She had a radical hysterectomy done back in 1998.  No reoccurence since as far as we know.  Her choices for treatment were hysterectomy or radiation.  She chose the surgery.  If she had to do it over again she would have chosen the radiation.  Surgery left her with lymphoedema.  Her left leg is swollen to twice the size of her right leg and there is nothing that can be done about it.  She has to rest and elevate it periodically throughout the day.  It happened because they took some of the lymph nodes during surgery.  It also happens with breast cancer patients in their arms.  We have a new exercise machine that is supposed to help with edema, fibro, arthritis, neuropathy etc.  We are both using it.  Started yesterday.  Hoping for it to help both of our conditions.  

My aunt also had cervical cancer.  Had the surgery and within a couple of years it was back, she did the chemo etc. and died very soon after that.  She was a great lady.  

When the gynecological oncologist performed my mom's surgery I believe (could be wrong) he told her that she would always have the human papilloma virus, that there was no way to get rid of it.  That's why I'm surprised that she can donate blood.
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on July 19, 2009, 03:32:08 PM
Approximately 1 in 4 sexually active adults have some form of HPV, though most will never know it.  It is always in a person's system, but if the Red Cross didn't let people w/ HPV donate blood they wouldn't have very much to go around!
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 19, 2009, 03:43:46 PM
Dragonfly C,
You are correct I did mistakenly refer to HIV and Hepatitis C as autoimmune diseases. I know very little about either, therefore stand corrected. Thank you. I guess what I was most focused on is the fact that these two as well as sjogren's are thought to be caused by viruses. Well the first two are for sure, sjogren's is ONLY BELIEVED to be, it's at least a suggested possibility. HIV & Hepatitis C I've heard more about and just know that they affect the immune system and blood is contagious. Sjogren's also affect the immune system, I was wondering whether it could be passed on to others through blood transfusions.

Thank you all for insight and imput. There is so very much I am still not knowledgeable of pertaining to sjogren's and the immune system. I read somewhere there are as many as 80 different autoimmune diseases! I am still trying to get understanding about the one I have.

Peace & Be Blessed!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on July 19, 2009, 06:42:43 PM
Bernice, if you'd like a book that gives a good overview of autoimmune diseases, Mary J. Shomon's Living Well with Autoimmune Disease covers most of them and has handy checklists.  She's not a doctor, so it doesn't provide a great resource for talking to physicians, but it's a solid reference text.  As I've developed a whole host of autoimmune diseases (Hashimoto's, Mixed Connective Tissue Disease, Sjogren's, Raynaud's), it's been nice to have a summary of each at my fingertips.

As for Sjogren's and viruses, they certainly can be related.  All sorts of things can kick autoimmune diseases into action, though there's usually a genetic aspect to it and once a person gets one, others tend to show up.  Type 1 diabetes runs in my family on one side and RA runs on the other.

Best wishes and thanks for starting this interesting thread! 
Title: Re: CAN WE DONATE BLOOD??
Post by: Patze on July 19, 2009, 07:21:17 PM
I wonder if us in the sero negative crowd could donate?  Hummm, interesting question; anyone have any thoughts?  (I couldn't donate anyway due to a genetic blood disorder (I coagulate so fast that the Red Cross told me not to bother anymore, now how sad is that?))

Patze
Title: Re: CAN WE DONATE BLOOD??
Post by: tuckerdog on July 19, 2009, 09:54:41 PM
Here is something I imagine nobody else had heard.  My opthamologist has been studying SJS for years.  He created the disease in mice by stressing them with dry air blowing on them.  Once he had the SJS mice he transfused blood from the SJS mice into normal mice.  Guess what.  The transfused mice also came down with SJS.  I used to be a regular blood donor.  Not anymore.

Tuckerdog
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 19, 2009, 10:50:42 PM
Tuckerdog,

I do believe that to be most scary! Just let me get this one straight. Are you saying regular dry everyday, every minute, every second AIR, that we breath???? If not what the heck is "DRY" air???? Without moisture????? I so what was it, the air or the stress OR combination of both???????????? What environment was this AIR from????

These are just a few questions you may need to take back to him, then please come back with the answer

Simple minded questions are often at the root of great mysteries.

This may confirm the suggestion that a virus is the cause!
Who is this mad scientist anyway? Is he still studying????

Peace & Be Blessed!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: stillsguy on July 19, 2009, 11:25:37 PM
To Linda,

for what it's worth, i just could not let your grand sweeping declaration pass uncorrected, but hep c IS an autoimmune disease. Many bugs, microbes, viruses (including hepatotropic viruses) can leave those predisposed to AI disorders caught between a rock and a hard place. It's the result of b-cell activation.


Sometimes cells fail to die, apoptisis, and the host goes onto cancer or perpetual b-cell activation, as evidenced by RF antigens, NH lymphoma, the various infirmities of myriad ctd's, etc etc.Im very interested in bugs, their length of stay in the host, genetics and all the solar influences in the manifestation of certaindiseases.



My own feeling is thdt some bug vombined with some genetics and some other dumb luck equals the flavor of the ctd; of course
Title: Re: CAN WE DONATE BLOOD??
Post by: Linda196 on July 20, 2009, 05:08:33 AM
Hello Stillsguy, welcome to Sjogren's World. Thanks for chiming in here. As you will see as you get to know us, any and all input is of great value, and I learn from all comments, and hope that others do too.

I understand your point, and because there are subtle variations in the definition of the various forms of hepatitis, its easy to interpret in a number of ways.

I was basing my comment on the evolution of the immune system in some people after infection with the hep C virus, resulting in autoimmune hepatitis, which is considered to be a different form of the disease. Of course my comment is only my opinion, and while it is shared by the medical people I deal with personally, I know there are many schools of thought on the subject, and there is a good case to be made for Hep C being exclusively an autoimmune disease.

Infection with the hepatitis C virus (HCV) can lead to autoimmune hepatitis in a minority of patients. This means that the liver cells are damaged not only by the virus but also by the body's own immune system. Not all people with Hep C will develop autoimmune hepatitis, and not all cases of autoimmune hep are preceded by Hep C.

Autoimmune hepatitis triggers the body to attack its liver cells, as if the liver cells were harmful foreign bodies. Patients with a combination of HCV and autoimmune hepatitis generally suffer from more debilitating symptoms than patients with HCV alone. Autoimmune hepatitis is associated with other autoimmune illnesses, including thyroiditis (inflammation of the thyroid), diabetes mellitus, and ulcerative colitis (inflammation of the intestines). Although only a few patients with HCV develop autoimmune hepatitis, these patients appear to have a genetic predisposition that makes them more likely to develop autoimmune hepatitis, compared to HCV-infected individuals without that predisposition.

As you can see, I agree whole heartedly with your comment about the combo of the "bug", genetics, and dumb luck contributing to the development of the disease.

Diseases like autoimmune hepatitis, sarcoidosis, and adult onset Still's Disease, which often result in CTD following infection with a virus, are generally referred to as immune-mediated inflammatory diseases.
Title: Re: CAN WE DONATE BLOOD??
Post by: Patze on July 20, 2009, 06:43:59 AM
Hi Stillsguy,

Let me also welcome you to the SJS World!  Please do peruse the board when you can, and did I mention the tons of terrific members too?

Can you post about your story so we can get to know you a bit more?

Take care -

Patze
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 20, 2009, 08:28:41 AM
Hello Stillguy,

Welcome!
You seem to very knowledgable good you too will be of great value to the site!

That's one of the great things about this board it's filled with very knowledgable people. Are you in the medical field? We appear to have many that are, me I really don't have a clue other than my personal experiences and what I read and oh! what my doctors tell me, so I'm loaded with questions, many to an wiser one may sound silly. I just think if we all put our heads and hearts together we may be of help to each other and who knows we may just be the very ones to solve this great mystery of sjogren's. Crazier things have happen. A great place to start might be with Tuckerdog's post. All we need is someone willing to gather up about twenty rats, a huge fan to blow air, turn it on high and let it blow on ten of them until they faint from stress, then draw some blood from them inject it into the other ten that have been lying back chillin,  test their blood to see which ones have sjogren's. Come back and report your findings to the site and we will put our great minds together to decide what the next step will be. Any volunteers?? LOL!   ;) :) :D ;D ;D:o

AGAIN WELCOME!

Peace & Be Blessed!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: tuckerdog on July 20, 2009, 10:08:29 AM
Bernice,

He took mice and put them in a cage.  He dried the air (yes regular air) so that there was very low humidity - probably <5% and ran a fan on them - blowing the dry air.  No other stress - the blowing dry air was the stress.  I don't know how long it took to induce SJS in the mice.  I also think it is interesting that the disease was transfered to other mice by transfusion. 

Tuckerdog

Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 20, 2009, 11:34:19 AM
Tuckerdog,
Like I said before I am not the most wisest when it comes to sjogren's and a many other things, but I am not so sure this study was as successful as your doc. might think. Could it be that it was already in the blood, but did not show up in blood work UNTIL stress was induced?? I do realize you don't have all the answers or know the mind of your doc., BUT if what he is suggesting is possible, not only is it a virus, and one that can be transmitted through blood, BUT an AIR BORNE VIRUS!,  WOW!

I really hope he is not right!
Title: Re: CAN WE DONATE BLOOD??
Post by: tuckerdog on July 20, 2009, 01:15:14 PM
Bernice,

Nobody said anything about a virus.  The mice were a normal population before they were put under stress.  What the study suggests to me is that there is a lot more to this picture than we know and a lot more work is needed.  I have to wonder though about all of the young people who spend all day working on computers.  I was doing that for about 15 years before I became symptomatic.  I also gave lots of blood before DX so I have to wonder about that too.

Tuckerdog
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 20, 2009, 01:27:19 PM
Tuckerdog,

I was just having some fun, hope I didn't upset you too much. I'm really just a very playful person that loves to laugh. I don't want to ever hurt or offend ANYONE! I just thought the mood needed to be lighten some.

But I am scared of the thought of his findings!

Tell your doc. thanks for at least having the gumption to TRY to come up with something! Most don't know, don't really wanna know!
PEACE & BE BLESSED!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: tuckerdog on July 20, 2009, 01:56:37 PM
Bernice,

Not upset.  The Dr has been doing SJS research for 25 yrs.  What he has done is important.  Now he has a model for studying the autoimmune process.  I am hopeful that it will lead to a lot more knowledge, not just about SJS but about autoimmunity in general.

TD
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 20, 2009, 02:22:35 PM
Tuckerdog,

GOOD! :-* :-* :-* :-* I KNOW it is very important and am VERY serious about thanking him! Tucker as I search for info. I find ALL saying the same, they don't know what causes it, so ANYONE WILLING to study, especially those that are not personally affected are very kind and important. Some doctors only want to know how to treat it, Many don't bother. Most are content just giving the answer they don't know what causes it. Very few take it upon themselves to search it out! So I am very appreciative!
 
Tuckerdog I do fear the thought that it is a virus, in fact a great many studies suggest this along with genetics, can't quite remember but some ...Barr virus. Anyone with the correct name please give answer.

 I  am not in anyway thinking that it is as dreaded as HIV and I did not / still don't know the difference between a immune disease and an autoimmune disease, what is the difference?? When it comes to the medical field some things have to be spelled out for me!

Peace & Be Blessed!
Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: stillsguy on July 20, 2009, 10:19:11 PM
to linda

just to keep u on your toes, a slight, and humbly i might add correction. autoimmune hepatitis does not cause the body to attack liver cells. autoimmune hepatitis is the disease which expresses as a result of the body's own hare kare against aforementioned liver cells. long ago I spoke with a researcher an immunologist who tut-tutted the larger portion of the medical community who were blithely unaware that "the liver was the hot seat of immunolgy" a phrase which has stuck to me over the years. there are multiple reasons why any organ can come under auto assault, maybe we can explore this topic later....?
(and yes that particular hepatitis virus seems to be misgraded a C when it seems to deserve an A for effort considering all the diseases its being "associated" with...             

http://emedicine.medscape.com/article/332125-overview

http://jrheum.org/content/early/2009/04/14/jrheum.080874.abstract

but in the devellopment of one's CTD's could a low-life term such as "coincidence " come into play? sorry if i'm suddenly vague... one question i ponder (sometimes) is this: of any given population of RA, SjS, Lupus etc patients what % were always going to express a ctd and also came across a bug that was thot to contribute in the development
of ctd? what if the bug remains undetected? does this explain any of the sero negative populations (or have the proper tests yet been developed to satisfactorily group them?)
Title: Re: CAN WE DONATE BLOOD??
Post by: stillsguy on July 20, 2009, 10:35:00 PM
 ... oops i pre-posted (and ladies i assure u ive never had that problem b4 hahah :D)

Patze

thanks 4 ur welcome and i shall post my story but sometime just bit later as itll prob b drawn out as it is rather longish boorish and at times ug-lee (and at other times quite laughable) and i feel like im posting too long already and "these things must be done delicately

bernice

thanks 4 ur welcome and, yes, i am in the medical field.... as a life long patient hahah (aren't we all tho... and who wouldnt love to b rid of this "association" once and for all ...
Title: Re: CAN WE DONATE BLOOD??
Post by: SLEEPY101 on July 21, 2009, 03:31:24 AM
Hi,

Re: the blood doner question. Another thing to consider is what medications are to on? I went to the blood bank a few years ago and was refused because I take a steriod based inhaler for my asthma so it could also be possible that some of us should not donate blood due to the meds we were subcribed for SJS.

Stephanie
Title: Re: CAN WE DONATE BLOOD??
Post by: moonstarr on July 21, 2009, 04:13:29 AM
i went to give blood and to become bone marrowto due to being mixed race as they are always in need and was told that due to the sjs and my meds that i could not do either i was so gutted
Title: Re: CAN WE DONATE BLOOD??
Post by: SusanL on July 21, 2009, 03:50:48 PM
I've thought about donating too, but think it might be too risky for the person/s recieving blood or any of my organs.  I did state to my husband and daughter, one day when I'm taken home ..... I would like to have my organs donated to and only to Sjogren's research.    Let them take what they need and careully study everything; who knows, perhaps they (researchers) can use of these cells causing SS to test current drugs or other discoveries that will counteract the problem.    We can still donate to help people.    I wonder where one can sign up for such a cause?

SusanL
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on July 21, 2009, 08:08:03 PM
Susanl,

That's a great idea! Never thought about that. I too wonder how to go about that.
Title: Re: CAN WE DONATE BLOOD??
Post by: Johnson on July 21, 2009, 08:44:12 PM
I was told it depended on the blood bank.  I know two people that were told they were permanently denied for different reasons.  (Totally different issues... one related to iron & the other a false positive to Hep.)  One of the people asked an explanation why at one place she's not even allowed & the other rec'd with open arms.  Basically she was just told that each blood bank has their own requirements.

My rheumotologist said I couldn't because of Hydroxocloriquine... so that was good enough for me.  It made me feel much worse before it made me feel better.  Someone who already went thru some other great stress, doesn't need to add that on.

I also heard that your organs are more likely to have infections too.  I will keep my organ donor sticker on though.  It just seems that would be situational & I certainly am not going to need them where I am going after I pass away anyway.
Title: Re: CAN WE DONATE BLOOD??
Post by: Joy Cox on August 04, 2009, 06:21:21 PM
Interesting Subject???? My husband had hepatitis a few years ago and we were dropped from the blood bank. Have discussed checking if I can donate and certainly will do so after this topic has come up on website as have friend with cancer who does not belong to blood bank  and has transfusions and they are not paid for by insurance. Is costing her many $$$$$$ out-of-pocket costs. Thanks for the ????? Joy
Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on August 05, 2009, 05:57:32 PM
Joy,
I noticed you said that your HUSBAND had hepatitis and they dropped "US" you both?? Why did both get dropped if only your husband ill.

Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: Shari on August 05, 2009, 08:40:18 PM
Interesting subject here that I truly wished had one firm answer as I do think it odd that each individual blood back could vary on what is acceptible.  That does not make sense to me and I would be hard pressed to take a chance on donating blood that has thhe potential of making anyone ill.  One necver knows who their blood will go to including children and those who may have allready suffered long with another illness.  I have an O - renewable supply of blood if it can be utilized.

I wondered the correlation between long term stress and illnesses...

Title: Re: CAN WE DONATE BLOOD??
Post by: Bernice on August 05, 2009, 09:21:46 PM
Shari,
I agree with you, it makes no sense unless it's got something to do with testing meaning maybe there has not been an real conscious whether or not autoimmune diseases can be passed on through blood OR that some are doing more thorough testing and others are not. Either way I agree at this point I will not donate, the thought of even possibly making someone else sick is more than I would want to live with. Unless like someone else said if person is already diagnosed with an autoimmune illness.

Has anyone heard of any clinical testing for SJS????  Where are our scientists on this, besides saying they don't know! THEY NEED TO BE ON THIS!

Bernice
Title: Re: CAN WE DONATE BLOOD??
Post by: tuckerdog on August 06, 2009, 10:52:45 PM
Rules for blood donations in the US are governed by the FDA.  In other countries the rules are different.  Many people with autoimmune diseases are disqualified based on the medications they take.  There is also a question that is asked - are you in good health?  If the answer to that is no, they don't let you donate.

Tuckerdog
Title: Re: CAN WE DONATE BLOOD??
Post by: SonyaR on August 07, 2009, 03:31:32 AM
I was a regular blood donor at my place of work for 3 years.  About 5 years ago when I donated they were concerned about me being anemic and ran a second test on the pin prick blood before proceeding.  It came back fine and I went ahead and donated that day.  A few weeks later I got a letter stating I was no longer able to donate as I had a false positive reading for Hepatitis C.  This was 3 years prior to any symptoms of SjS.  I didn't even go to a Dr. for my complaints until this past December and was only diagnosed 3 months ago. 

Was disappointed to see the post regarding organ donation :(

Sonya
Title: Re: CAN WE DONATE BLOOD??
Post by: jade on November 22, 2010, 05:01:05 AM
hello everyone.  i know this is an old subject but wanted to share what i was just told.   i wanted to donate blood for the first time and called the carter blood care and i was told that auto immune disease does not automatically disqualify you from donating.  she said that there are a list of medications that if you are on them you will not be able to donate.  and we would have to see if our medications are listed on there.  and she said she is aware of sjogren's and it's not an automatic disqualifier. 

i agree with someone's post on here.  it seams like the life saving qualities of our organs and blood, i would imagine, would outweigh our sjogren's condition. 

Title: Re: CAN WE DONATE BLOOD??
Post by: Scottietottie on November 22, 2010, 10:20:25 AM
I know for a fact that one cannot continue to donate blood in the UK and I'm pretty sure they don't want our organs either. Actually I think I'm out of the agegroup they'll accept donations from now anyway.

I have my "Thankyou but no thank you any more" letter.
Title: Re: CAN WE DONATE BLOOD??
Post by: navydad on November 22, 2010, 11:17:54 AM
between Mayo and every other place,, they got enough of my blood to fill a tanker
Title: Re: CAN WE DONATE BLOOD??
Post by: newtosjs on November 22, 2010, 02:07:24 PM
I read the Red Cross guidelines once and it said you had to be on no anti-malarials for 2 years before you could "consider" donation. I would think that would pretty well cancel out all of us on Plaquenil.

Funny off the track story. One hospital vist, my nurse came in with a pill cup and said "Here is your anti-malarial" as she was backing out the door as fast as she could. Didn't want to catch anything, still makes me laugh how stupid she was.
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on November 22, 2010, 02:30:42 PM
Newtosjs,

The Red Cross requires people to wait 3 years after receiving treatment for malaria, which is different from waiting after taking anti-malarials. 

It really depends on the individual person and the organization collecting the blood: "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." http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=604&zoneid=76

Sjogren's is a sister to lupus (seen, in fact, as a type of lupus by many doctors), so the above applies to us, too.  That said, it's always good to check with your doctor and with the local blood donation organization. 

--C.
Title: Re: CAN WE DONATE BLOOD??
Post by: Lesleybird on November 22, 2010, 04:59:02 PM
  Here's the deal....Even if we gave blood with Sjogren's antibodies....SSA, and or SSB, there would only be a few of them and they would not be able to reproduce so the few antibodies would not be able to cause too much dammage. It is our immune system that keeps pumping out these antibodies all of the time that makes us sick, not just one days antibodies in less than 15 percent of our entire blood volume worth of these antibodies. The person receiving our pint of blood might even make antibodies to our antibodies.      Lesley
Title: Re: CAN WE DONATE BLOOD??
Post by: irish on November 22, 2010, 10:10:07 PM
I haven't read all the posts on this thread so pardon me if I am repeating something.

I was told years ago when I wasn't feeling good not to give blood. I think that doc knew that I had some type of autoimmune disease but didn't know what. I have also heard that most people in this state can't give blood with autoimmune disease. I'm sure the meds have a lot to do with it.

The other thing is that it is hard on us. When we have autooimmune disease our body is working so hard to kill us off and the way I see it the minute any stressor such as donating blood sets us up for another flare or possibly infection or anemia. We are already suffering from fatigue so it doesn't make sense to subject ourselves to further stressors that will make our condition worse. If we want to "give" of ourselves there are other volunteer jobs that one could do to help us feel worthwhile and of intrinsic value. Irish ;D
Title: Re: CAN WE DONATE BLOOD??
Post by: DragonflyC on November 23, 2010, 05:54:42 AM
Great points, Irish!

I don't give blood for exactly that reason--I don't usually feel well.  I work at a school, though, so it's easy for me to pitch in during the annual blood drive here.  I help the kids hang posters advertising their blood drives, cover classes so that other teachers can give, and try to recruit adults from the community to come in and give.  I would imagine that it's just as easy to help out at community or church blood drives. 
Title: Re: CAN WE DONATE BLOOD??
Post by: inga on November 23, 2010, 09:03:33 AM
I think you would be putting others and yourself at risk.

If you are ill, why donate blood?  Donation is tough enough on healthy people! 

AAN is passed passively.

http://www.ncbi.nlm.nih.gov/pubmed/15306637

It is known that mother's pass on antibodies to their fetus.

I would rather not get blood from ill people, and would not consider giving mine to anybody.
Title: Re: CAN WE DONATE BLOOD??
Post by: genko_b on November 23, 2010, 03:32:48 PM
There is a minimum weight limit to donate in our state and I'm under it. But I can't imagine being able to give blood in any case since we need every drop of moisture in our bodies as it is.

Genko
Title: Re: CAN WE DONATE BLOOD??
Post by: Prairie Gal on November 23, 2010, 05:09:43 PM
Pre-SjS Dx, I gave blood for several years and then they asked if I'd donate platelets (aphersis).  I did that for several years; they said my blood showed I'd never had X virus (can't remember the name), so they could use it for babies.

When I got the SjS Dx, I told them.  They looked it up in their handy-dandy manual and said it was OK to continue to donate.  At my next appt. with my rheumy, I asked what he thought.  He said, "I wouldn't want it!"   I hadn't looked at it from the recipient's point of view.

On the other hand, there are lots of people with SjS walking around undiagnosed for years and donating blood -- as I did.  So I  quit worrying about whether my blood might have made somebody sick.   I did quit donating blood, even though I felt quite well for a couple of years after the Dx.
Title: Re: CAN WE DONATE BLOOD??
Post by: kim31072 on November 24, 2010, 05:37:57 AM
Medic and Red cross do not disqualify you because of AI illnesses because of the rigorous cleaning and inspection the blood goes through.They do disqualify based on meds you take...they have a list if anyone is interested in donating.

You may also donate you organs.I called and asked after I was diagnosed with SLE as I have been listed as an organ donor since I received my license.I was told the organs would be inspected at time of collection and based on the doctor evaluation then any that were viable including skin,eyes,etc would be taken and used even if they felt they would only hold the recepient for a 6 month to a year period until a more suitable organ found.If it was a matter of using an organ that would save a life that wasnt perfect/coming from AI issue vs patient dying  they would use it then replace if they felt it was needed or not performing as it was the lesser of the evils in the case.I guess I would feel that way too if I were the person waiting.
Title: Re: CAN WE DONATE BLOOD??
Post by: CK on December 01, 2010, 12:38:22 PM
I do not know for soujourns but for lyme we are not suppose to donate blood -- they used to let you but they changed it recently.