Toolkit for GPs

This is just a quick post to say that an excellent, comprehensive and easy to understand toolkit on Ehlers-Danlos Syndrome aimed at primary care/GPs is available on the British Royal College of Physicians website.   Not only does it cover hEDS in detail it also has excellent information on MCAS and POTS in the ‘Emerging Major Associations’ section – hurrrrah!  Maybe now we might start to find Doctors in the UK who have at least heard of these three disorders and the more people who are diagnosed the less “rare” they will all become.  Because we know they’re not rare don’t we?!

It’s been interesting reading through all the info and I’m definitely sending the website link to the Eye Consultant I saw at the hospital this week and my GP just in case she hasn’t got the memo.

 

 

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10 thoughts on “Toolkit for GPs

  1. lavenderandlevity

    This is really useful. It’s actually the first time I’ve seen orthostatic hypotension mentioned as as big a comorbidity as POTS. OH is by far more problematic for me than just the heart rate increase, but it confused even some “in the know” doctors who thought only POTS was an EDS comorbidity, not all forms of autonomic dysfunction.

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    1. Jak Post author

      Me too! I don’t have POTS, ie increased heart rate on standing, but I do have OI, ie feeling nauseous, light headed, weak and ill on being upright.

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      1. lavenderandlevity

        I do meet POTS criteria, but I’m not as bad as many in raw heart rate. My blood pressure drops low enough to either make me full on pass out or have to drop whatever I’m doing to lie down so it doesn’t go down into fainting territory. Ugh. A good reclining chair helps when you’re at that stage of “conscious, but only when horizontal.” :-p

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  2. Jan Groh

    So glad you like it! I was honored to be tapped along with some other esteemed company to contribute by lead author, heavy lifter and fellow EDS patient and GP Dr. Reinhold on Twitter! She agrees, EDS & HSD definitely plays much too well in the sandbox with MCAD etc. (She has some painful first hand experience.) I’m quite pleased with it. It’s going to help people all over, not just in the NHS, hurrah for all! Great job NHS!

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  3. melody

    Wow, thanks. I didn’t think my localized hypermobility was really an issue or connected with my autoimmune and MCAD/histamine problems, but now I’m wondering.

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    1. Jak Post author

      From speaking to other patients, MCAD can definitely cause joint laxity in some people which doesn’t meant they have Ehlers-Danlos but hypermobility due to mast cell issues. Of course, people with Ehlers-Danlos seem to be more prone to MCAD than the general population so there’s definitely something weird going on.

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      1. melody

        Hmm, yes, interesting, and I know that my mother for example had some of the same hypermobility as I do–we used to joke that our knees bend backwards like bats. It looks like I score 5 out of 9 on the Beighton Scale, and probably would have been higher decades ago, so suspect I’m somewhere on the hypermobility spectrum of disorders, but I don’t think it’s hEDS. I never really noticed problems with any autoimmune issues until sometime in my 30s and then suddenly when 44-45 I became allergic to everything in one frightening summer. I have lots of relatives with autoimmune problems, gut, neuro, cardiac issues, etc., but never paid much attention to the hypermobility side, which actually has not seemed to cause me much difficulty in itself, but is part of the puzzle of symptoms.

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