support/ help

[Cornwall24]

My husband has been in hospital since the 26th of May, he was a patient for 6 days before we had a diagnosis of dermatomyositis. He is currently in intensive care, he has a feeding tube and is bed bound. He is 53 years old with no medical history, 5 weeks ago was working 10 hour days with a very physical job. I would love anyone to reach out and give me some support, advice etc to help us navigate the road ahead - Thanks in advance

[Jo-Goode Administrator]

Hi,

Very sorry to hear about your husband's health, I hope he will respond to treatment very soon.

My onset in the early 90's (aged 25) was also unusually rapid & extremely aggressive, as lost all function & heart & kidney's were failing. I'm approaching the 30th anniversary since my diagnosis, in this time had a long period of remission; unfortunately relapsed in 2012 but remaining stable on treatment.

This web based group is unfortunately not very active, which is why I started a UK group over on facebook 8 years ago, it's a private group so only members can see posts.

Please join us via this link facebook.com/groups/themyos...

Jo Goode - Trustee/Treasurer Myositis UK

[Cornwall24 in reply to Jo-Goode]

Thank you, I’m not on Fb at the moment but I believe he has joined a support group on fb