can Ataxians donate their organs?

[Amynah]

Hi everyone , I am just curious about whether we can donate organs or not? What do you all think? thanks

[cocoa]

Not sure about that but when I received my diagnosis in London I was asked to donate my brain for research.

[Amynah in reply to cocoa]

I am meeting my consultant tomorrow will ask her. I think Reseaerch is good idea!

[wobblybee]

🤔 I realise this doesn’t mention ataxia, but some people here are actually diagnosed with MS or Parkinsons, this info may be helpful.

Organ donation

March 2019

Although people with multiple sclerosis can't give blood or donate bone marrow, the donation of organs is allowed. This is because the recipients of organ donations can be told about the donor and are in a position to weigh up any associated risks. With transfusions of blood this is not possible, as the blood is stored and given out anonymously.

We don't know exactly what triggers multiple sclerosis to develop in a person, although we know about a number of risk factors. This means that we can't be sure that a transplanted organ from a person with MS won't set off the condition in the person who receives the organ. However, the recipient might well be happy to take that chance, if it means that a more serious condition is improved.

Donating organs for transplantation

The NHS has an Organ Donor Register (link is external) which operates throughout the UK and allows you to register your decision to donate, or not donate, your organs for transplantation after death.

England, Scotland and Northern Ireland currently have an opt-in organ donation policy where your consent is required to allow your organs to be donated after your death. In 2015, Wales introduced an opt-out policy meaning that if you haven't recorded your organ donation decision (to either opt in or out) on the Organ Donor Register, you will automatically be treated as having no objection to donating your organs.

From 2020, there will be an opt-out policy in England (link is external) as well. There are also plans for Scotland to move to an opt-out scheme (link is external) in the future. In Northern Ireland there is currently a consultation on whether an opt-out policy will be adopted (link is external) here too.

Donating tissue for research

The Human Tissue Authority regulates organisations that remove, store and use human tissue for research, medical treatment and education. Their website features a list of brain banks (link is external) including the UK Multiple Sclerosis and Parkinson's Tissue Bank (link is external), which stores tissue from the brain and spine of donors for research projects. This tissue bank provides information for those considering registering as a donor (link is external).

Find out more

The bank that gives hope – Open Door May 2010

Human Tissue Authority (link is external) – regulates the handling and use of human organs and tissues

NHS Organ Donor Register (link is external) – Organ Donor Register for people in the UK

Organ Donation Wales (link is external) – information on organ donation in Wales

Organ Donation Scotland (link is external) – information on organ donation in Scotland

Organ Donation Northern Ireland (link is external) – information on organ donation in Northern Ireland

[PatsyIpswich]

I havent heard anything to the contrary but did read something about having to opt out rather than rely on people opting in.

[Lucycord123]

Yes my mum did

[hsilverman1]

Hi,

I am going on donate my brain 🧠 to the National Ataxia Foundation (NAF) of the USA.

Thanks 🙏

[Jobbo16]

Hi Amynah I suffer from cerebellar ataxia Sca 1 I donating my organs

[Amynah]

Hi again, I spoke to my consultant and she we can donate everything except brain. Because that is where ataxia resides