Am I ok to do the above with a positive dx of Muckle Wells? Thanks x

Dear Sassy6, That is a very good question. I would ask your doctors about this, and I am going to ask some experts and get back to you on this too. It would likely not be an issue to donate blood, but I need to find out more on that first. If you are on medications that modify Il-1 in your body, such as Ilaris, anakinra, or arcalyst, there can be a higher risk for infection, and that could be an issue for the blood donation. As for donation of organs, or bone marrow, I would suspect that it would be a concern. I will get back to you with more info from some experts on CAPS in the next few days. Thanks, Karen Durrant NOMID Alliance

Dear Sassy6, I am still waiting for more details from experts, but this is what I have so far. "Since red blood cells do not have DNA, donating blood should be fine. White blood cells should not be donated as they contain the cells that can release Il-1 rapidly and in essence the patient who could get white blood cells could get a NOMID flare. But practically I do not believe that a blood lab would take blood from a patient with NOMID, at least here (USA), volunteers who donate blood do not need a genetic diagnosis" As far as if you wanted to have a blood transfusion, this is the info I have for now: "I do not think that there will be an immunosuppressive effect if NOMID patients get blood either filtered or unfliltered." NOMID is a form of CAPS, and the form that has the most severe inflammation. So it sounds like as far as the blood donation issue, you would be ok to receive blood, but donating your blood or other organs, or bone marrow would not be a good idea. I will get back to you on this, as I get more feedback from the experts. This is a GREAT question! There is a bunch of experts at a conference in Europe discussing this right now, thanks to you. Best wishes, Karen Durrant

Dear Sassy6, Here is some more info that I got in regards to organ donation and bone marrow from another expert: "Organs should be fine as long as there is no evidence of damage from amyloidosis. Bone marrow is probably not a good idea since that will transfer disease." I hope that sums up that part of the topic. As for the organ donation, I would add that it would probably be up to the transplant doctors to determine this, and I can find out more info, but it sounds like people should avoid giving bone marrow. It is also likely that blood donation would be in question but I will find out more on that soon. This is an excellent question. Thank you! Would it be ok if I shared this question and answer (not your name or screen ID) on our facebook private CAPS forum? It is a lively community of 175+ patients and growing from around the world that have CAPS. I think that the patients there will find this a topic of great interest too. http://www.facebook.com/groups/41019328476/ Thanks, Karen nomidalliance.org

No problem with sharing this on fb. I am a member of the group too. My main reason for asking is because a support a charity called post pals here in the uk. It send sick children cheerful mail through the post. I often see poeple drumming up support for blood, bone marrow and organ donation and would like to be able to say I'm on the register should a potential match come up. I will watch this space with interest. Sx

Just found out that I'm not a member of this group after all but I've sent a join request x