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Rare Disease Day - a story from another sort of vasculitis

Posted , 8 users are following.

EileenH
EileenH

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

10 Replies

  • Oregonjohn-UK
    Oregonjohn-UK EileenH

    Posted

    You are as bad as me for research Eileen!
    • EileenH
      EileenH Oregonjohn-UK

      Posted

      It's a forum I'm a member of - there are a few GCA patients on it - so it was handed me on a plate so to say.

      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
    paul45653 EileenH

    Posted

    Eileen,

    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
    linda81950 EileenH

    Posted

    Eileen, I cannot stress enough my respect for you!!  Your accomplishments show how determined you are to prove that you are not going to let your rare form of vasculitis stand in your way.  You have met numerous obstacles in your journey including the medical profession who refuse to look past the obvious and search for answers on your behalf.  You are to be commended as should your husband for standing together and facing this advesary face on.   Never change and never let negativity stand in your way!!!!    Linda
  • julian.
    julian. EileenH

    Posted

    how very understated, but nice not to have to wade through a heap of melodrama.
  • artfingers
    artfingers EileenH

    Posted

    Thank you for sharing that post.  It was insightful and well written.  Yes, it also makes me thankful in some ways for what I have as it is nothing compared to what others go through.  My massage therapist's son has Cystic Fibrosis and I love hearing how his son pushes on and through his life so valiantly.  I had him as a student and am so proud of all he does facing his disease head-on, no holds barred.  Thanks!
    • EileenH
      EileenH artfingers

      Posted

      Yes, my niece has CF too and her entire life must have been spent reaching her expected life span! She's nearly 39 I think now - and at the beginning of last year posted on FB that the year had started with bad news. Since she is well below 50% lung capacity on a good day I assume it is she is now on the transplant list. Her father died of lung cancer (not a smoker), her mother has pancreatic cancer - no wonder Jules has down days but they seem few and far between, She happiest out walking or riding the horse a friend has "lent" her to look after and enjoy. And the house is a veritable menagerie! Plus a lovely husband.
    • artfingers
      artfingers EileenH

      Posted

      Yes, though the life expectancy has risen steadily which is good.  This young man (in fourth grade) is in scouting, active at school, and doesn't let anything slow him down.  His zest for life always surprises me.  He has trouble keeping the weight on is all but his family is extremely well versed and do so much to advocate for this disease.  I'm so blessed to know them.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada EileenH

    Posted

    I belong to that forum as well. As you and others have pointed out, PMR, as much of a challenge that it can be, is so much easier to deal with than many other diseases or disorders.  

    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
      EileenH Mrs.Mac-Canada

      Posted

      It's historical. When the lady who got the NE charity going was first diagnosed with GCA she could find nothing in the UK and contacted the charity which eventually turned into Vasculitis UK charity - they didn't want people with GCA joining in, it was a rheumatology thing and they were "vasculitis", I suppose it must be 10 years ago or even more.  So she went off and did her thing. ArthritisUK are similar in outlook too - PMR isn't arthritis, a group was told they couldn't have access to a hydrotherapy pool. In the meantime - GCA is recognised as a vasculitis and PMR is almost certainly vasculitis of the very small arteries. But awareness lags WAY behind. Even amongst doctors - even I discovered a few weeks ago, amongst rheumatologists!
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