Rare Disease Day - a story from another sort of vasculitis
Posted , 8 users are following.
This is a post from a lady on another forum devoted to vasculitis. GCA counts as a rare disease, PMR not so much, but this is a very thought provoking account of her experiences past and present, some of which we share. I do hope the moderator will approve it. And maybe others will share it too.
"My Rare Disease Day blog on implications of living with a rare disease
Ranges across diagnosis, treatment, attitudes #vasculitis #raredisease
https://vivsacademicblog.wordpress.com/2016/02/29/implications-of-living-with-a-rare-disease/
Feel free to share elsewhere."
0 likes, 10 replies
Oregonjohn-UK EileenH
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EileenH Oregonjohn-UK
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I think it does people good to know that there are a lot of people out really rather worse off than we are. A couple of hours on that forum a week makes me very grateful for what we have - or rather, what we don't have.
paul45653 EileenH
Posted
The other deep pit we can fall into is the combination of ailments all with symptoms similar to PMR/GCA. This can lead to your medical care looking like a game of ping pong. Where the Rheumy doesn't want to touch things she thinks are only to be treated by the GP and vice versa, and neither have the sense to refer to a more specialized department. All the while the real Dx requires special testing to eliminate things one by one. I'm in such a situation right now scheduled to my Rheumy this PM. Today I will be more proactive than ever before. In the US, certain coverages such as retired military getting care in a major HMO, weild a bigger stick than under NHS. But not all of us over here have that much flexibility.
linda81950 EileenH
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julian. EileenH
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artfingers EileenH
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EileenH artfingers
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artfingers EileenH
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Mrs.Mac-Canada EileenH
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Is there still a question that PMR is vascular or not? I thought it had been found to be. That being said, if more people with PMR contact vascular groups more attention may be given to it. Just a thought🌸
EileenH Mrs.Mac-Canada
Posted