Forum

Organ Donation with MS?

I live in Wales which, at the end of the year will become the first part of the UK that will have an Opt-OUT rather than an Opt-IN system for organ donation. It will mean that, on death, you will be presumed to be a consenting organ donor rather than Doctors having to seek actual proof of your intention to be an organ donor and/or the immediate consent of your next of kin. Domain Registered at Safenames

I am STRONGLY in favour of organ donation because I have known people who have had donations (including my niece’s other half who has had a heart-lung transplant) and I also know people who are hanging on by a thread waiting for donor organs.

HOWEVER , as someone who has MS (currently on Tysabri), I am sure that I have heard people say that I am not allowed to donate organs (not even allowed to donate blood either I think) but I can’t find a definitive information anywhere. (If I can’t donate it would probably be sensible for me to actively Opt-Out rather than just expecting that everything would be picked up in short window of time available - people living in Wales might share my slight concern about the general standard of record keeping in the NHS here (brilliant doctors and nurses here but admin not the organisation’s strongest suit))

Anyone got an idea?

As an additional question, does anybody wear a Medic Alert bracelet because of their MS/medication?

probably best if you contact someone about this since they would probably know better than someone on a forum :slight_smile:

and no medic alert bracelet, should be not for MS, for other conditions :stuck_out_tongue: don’t see the point since MS doesn’t on the whole effect how i would be treated medically

I took this from the https://www.organdonation.nhs.uk/supporting-my-decision/myth-busting/

Can I donate my organs or tissues if I have a medical condition?

Very few medical conditions automatically disqualify you from donating. Medical professionals decide to use your organs and/or tissue based on strict medical criteria. Certain organs and/or tissue may not be suitable for transplantation, but others may be fine. Let the doctors decide when you die whether your organs and tissues are suitable for transplants

Oh wow, for some reason I thought we were opt-out already. Kind of mortifying to know that’s not the case : /

If we’re not allowed to donate blood because of the impact it can have on our own health (which is what someone, I can’t remember who, on here said), then I don’t see organ donation after death being an issue.

Good luck in finding out!

people with MS can’t give blood because generally when blood is needed and used, consent might not be able to be given by the person receiving the transfusion, nothing to do with our health. with organ donation the person can generally decide if they want an organ from a person who had MS. some people do not want blood or organs from a person who had an existing disease, organ donation gives the person a choice, blood donation often doesn’t

Have you heard of the MS Tissue Bank?

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Already signed up for the tissue bank in Wales.

I have to say when I was diagnosed I was told I couldn’t donate blood as it was detrimental to my health, it seems I was lied to.

The following is from the MS trust.

People who have been diagnosed with multiple sclerosis cannot give blood. This is a blanket ban that applies to ‘chronic conditions of unknown aetiology’ and includes a range of other conditions such as rheumatoid arthritis.

People with MS also cannot donate bone marrow. To join the NHS Blood and Transplantation Marrow Registry you have to be a registered blood donor. Although being a blood donor is not a requirement when registering with the Anthony Nolan Trust - a charity that finds bone marrow donors for people with leukemia and blood disorders - MS is also one of the excluded conditions on this register.

People with MS can be considered as organ donors.

The reasoning behind this distinction is based on the fact that the cause of MS is currently unknown. Until there is evidence to prove otherwise, it is considered sensible to avoid donations from people with MS when there may be something in the blood that is a contributing factor to developing the condition.

As an organ transplant requires the consent of the recipient, they can be informed of any potential risks before they make their decision. The availability of organs is also limited and so any potential risks are weighed against the the consequences of not proceeding with the operation.

In comparison, it is not possible to identify a donor at the point when the blood is being used, so any potential risks have to be screened out at the point of donation.

Jan x

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I was told I can’t give blood because of the MS and it’s cause being unknown, but that with organs a patient can make an informed decision whether or not to accept an organ from someone with MS.

I do wear a medic alert bracelet, following a major operation when the anaesthetist struggled to intubate me. He advised it should read ANAESTHETIC RISK DIFFICULT INTUBATION. After my diagnosis of MS, ten years after the operation I updated medic alert, and now my bracelet reads ANAESTHETIC RISK DIFFICULT INTUBATION - REASON MS.

I keep intending to ask a neurologist or Ms nurse if MS is the cause of difficult intubation.