MSA profile

[Birdladyuk]

My husband Ian was diagnosed with MSA last year and sadly died between Christmas and New Year. What made it more sad was that he was happy for any kind of body donation - he would've been so pleased to have donated his brain for MSA research, but his date of death meant viability was lost by the time any establishment was open again in the new year to receive him.

His death certificate only mentioned a chest infection - which I understand is the often the thing that ends the life of MSA patients. It's no wonder nobody has heard of MSA if its presence isn't documented as in my husband's case. The profile of the MSA Trust can't get publicised and funds/care/knowledge raised if this vital information is missing from data collected.

[Hightidelowtide]

I am so sorry to hear your sad news and the difficult time you and your husband have had over the last year or so. I think you raise a god point about MSA not being mentioned on the death certificate as this can feel very important to families, and as you say raise awareness of MSA. I wonder if the MSA nurses can advise on what best practice might be?

I hope you have good support at this difficult and sad time time xxxxxx

[Birdladyuk in reply to Hightidelowtide]

Thank you very much for your kind wishes, and yes, I'm very lucky to have wonderful and caring friends and neighbours. Might be good to continue the subject of certification etc at any opportunity - most people I've spoken to on the subject (including medical people) are not aware of MSA. XX