Hi, my name is Purrpuss!

Purrpuss
Purrpuss Community Member Posts: 3 Listener
in Start here and say hello
Actually my name is Gwen but I'm a mad cat lady.  I'm 72 and live in Scotland.  I have Ehlers-Danlos Syndrome which is a genetic condition that causes my body to produce faulty collagen.  Collagen is the "glue" that holds ones body together.  For people with EDS this doesn't happen (in varying degrees of severity) and we are easily prone to sprains, dislocations, prolapses, hernias, chronic pain and fatigue.  Lots of other bizarre things that tend to coexist with EDS such at POTS and craniocervical dysfunction but I won't bore you with those.  I have EDS fairly mildly but it's still a pain in the a*se that I could well do without.  I'm a retired mental health nurse/social worker, a keen bridge player and volunteer for a couple of animal related charities.  I have a lovely, supportive partner and a large, goofy cat.
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  • steve51
    steve51 Community Member Posts: 7,121 Championing
    Hi @Purrpuss

    Good Morning.

    It’s great to meet today.

    Please please have a good look around.

    Please please let me know if I can help/support you!!!!!
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  • Lasian_Alumni
    Lasian_Alumni Community Member Posts: 650 Empowering
    Hi @Purrpuss, welcome to the community!

    I also have EDS (and PoTS) and absolutely adore cats, so it's very lovely to meet you :)  Please do have a look at our different groups and discussions to see what you might like to get involved with. :)

    You might find one of our recent discussions interesting: https://community.scope.org.uk/discussion/45129/recently-been-diagnosed-with-hypermobility-spectrum-disorder-any-advice

    Even though the person originally posting has Hypermobile Spectrum Disorder, most of the information and support is great for EDS as well.

    Please do get in touch if you have any questions!
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  • Purrpuss
    Purrpuss Community Member Posts: 3 Listener
    Hi Lasian and Steve. Thanks for pointing me in the direction of the hypermobility thread. I'm actually a member of Ehlers-Danlos Support UK and find they are a very active and supportive charity. 2016-17 there was a huge international revision of the diagnostic criteria for EDS and it is the "pet" disorder of the Royal College of General Practitioners for 2018.I'm also an adminon a Facebook page for people with EDS. 
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  • Alex
    Alex Testing Team Posts: 1,281 Pioneering
    Hi @Purrpuss,

    That's great to hear. What's the address of the Facebook page?
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  • Purrpuss
    Purrpuss Community Member Posts: 3 Listener
    EDS Support Scotland is the one I am admin for but Ehlers-Danlos Support UK also has various Facebook pages for different parts of the country.  The ones for Scotland are Aberdeen, Glasgow and Edinburgh.
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