Evan's syndrome is so rare and obscure it seems not much new information is being massed.`

[garlicking]

I've reached out to sites on Evan's syndrome and never evan got any response. It seems there would be groups with info on diet, treatment, and such that would be available but have found on responses yet. Since contracting this disease no guidance from any on line community has been received. If anyone knows of any groups that deal with this disease I would be grateful to find them. I would consider treatment or study groups to help find a cure for this disease.

[Hidden]

garlicking, oh no! I’m so sorry you haven’t gotten responses on your Evan’s Syndrome site. Could just have been timing? Did you try more than once?

Idk what Evan’s Syndrome is, could you fill me in? Please tell me what you are going through.

[thestorm]

Hi garlicking, I am with Brook here, but I to am sorry that your posting is non responding. I do know about Evans syndrome, as my only little brother had testing from a good Hematologist , but sadly he passed away before fully diagnosed. I hope this helps you, here is a web site dedicated to this very rare, and attacking disease. It is called " The Evans Syndrome Community Network", Evans Syndrome.blogspot.com and I used it often years ago to understand this condition for him. Sorry I tried to copy and past the site, but my computer or me did not want to co-operate. When you get on it, there are many helpful links to the right, on support, help, information, blogs communities, and so much more. Let me know how you do. Are you in the UK ? it doesn't matter as the community is global. So are we. Another one is called Kirsty's cause, just google it. I am so sorry on this very rare condition for you. Many of us here have conditions that even Doctors do not understand, let alone the public. We are here for you. The hub is very kind, and know many of us with our conditions care about people with your conditions. Thats a learning experience for us all!! You are very welcome to be here, learn about others, and it opens doors to new hopes and graces. Sending you my best, blessings and peace, thestormy sunshine, Got that new name from sweet Brook up there. Xxx

[Hidden in reply to thestorm]

The Stormy Sunshine to the rescue! You can always depend on her to lift your spirits. 🙏

[HarveyHare]

I was diagnosed with Evans Syndrome as well as with APS two years ago. Initially I was hospitalised, started on large doses of steroids and was given a blood transfusion. On discharge I started on mycophenolate and hydroxychloroquine plus obviously warfarin for the APS. I agree that there seems to be no support groups or even much information as to research into the causes of the disease. Are you UK based?

[garlicking in reply to HarveyHare]

No I live in the US. I receiving good treatment from my wonderful doctor i've had for years and all is going well for now. I am just taking steroids for now to keep my hgb in check. The side effects are not great but I have gone from 70 mgs to 50 mgs and hope to decrease more over time. Thanks for the support as I continue to look for other sources of information.