I've said repeatedly that if it wasn't for the knowledge on this forum, I would have been lost on my journey with GCA, at the end of the month will be the first misdiagnosis.
The third row down second from the right is yours truly, Grammy80, Marilyn's Story with GCA. I just received notification from Instagram (which I do not follow) of this posting. I'd registered with the autoimmuneregistry.org, one of the few websites I could find in the states other than medical information. I'd filled out a survey and they contacted me to publish my story about misdiagnosis to increase awareness.
I've emailed them for a copy of the story. I wrote it and they were going to edit it before publication. Actually, I'm not precisely sure where it is at this point, but I'll find out.
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Grammy80
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Thank you for letting us know about the Autoimmune Registry. I've looked at their website and fully support their aim ''to improve statistics and research on this important class of disease''. I've signed up for their newsletter and will contact them to find out if they welcome input from those of us outside the USA.
Just a couple of quibbles so far - in their listing for GCA for ''Typical age of onset'' they say ''Mostly occurs in adults between the ages of 70 - 80''. Mine started when I was 66 and many on this forum were a lot younger when they first showed symptoms. Similarly for PMR they say ''The average age at diagnosis is 70. PMR is rarely diagnosed in individuals younger than 50.'' From what I've read on here I think this too might be a little bit misleading.
I think it is VERY IMPORTANT for medical professionals to get into this century - a lot of them are well behind!! Some on this forum were in their 40s when PMR or GCA struck them.
In the new guidelines both for PMR and GCA, the age range is down to 50. This was due to hard work by Patients Representatives on both committees. Two of whom had PMR and were in their 60's and founght like deamons. They even did a survey and produced figures and stories.
Thanks...I think input for out of the states would be really helpful and make them aware of paths they don't know exsist~! The states are so far behind the UK in the diagnostic approach, especially after listening to Dr. Dasgupta, and misdiagnosis is all too prevalent. I think it would be wonderful Marijo, this group is really trying to bring diagnosis to the forefront to make GP's aware.
When you get a link, that is not with Social Media (I don't use any of them at all) can you post it or email it to me please.
Also remember that a man called Dr Eric Matteson who worked in the Mayo Clinic, made a tremendous contribution of research into b oth GCA and PMR. He retired last year and was a brilliant man and a likeable person. So your country does make a contribution.
Thanks...the Mayo Clinic actually saved my life, literally, back in 1985. Another terrific contributor from the states is Dr. John Stone from Massachusetts General Hospital. He is the person who organized the year-long, I believe, the study of TCZ and got it approved for use here. He is the 'go-to' person here.
The amount of patient information available in the UK so far exceeds what is available to us in the states it is incredible and I know this organization is trying to change that. The link for them is autoimmuneregistry.org. They are gathering information from different patients int the states regarding their diagnostic journey. 💖
I too shall have to check the registry out. I live in Michigan but spend every summer in Maine in Sweden (near Lovell). Even with PMR I manage to struggle up the mountains but can't do the "big" ones anymore without my son's help pulling me up the difficult bits. I shall be there hopefully all of August! Can't wait.
That is really sweet, I'll be 80 in September, so I surely appreciate compliments. I just had my photo taken, only the second time ever. Either the prednisolone or TCZ has turned my hair really curly and thinning. I figured I'd get a photo for my sons and grands while the hair was still there. I really just smile a lot! xo
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