hEDS

ItsJeni

Hi, I'm new here and I have Hypermobile Ehlers Danlos Syndrome (hEDS) amongst a multitude of other things. Does anyone have any advice regarding getting medical support from a GP? I've had a lot of medical gaslighting and accusations of being a hypochondriac in the past but I've recently moved house and hoping to start a decent rapport with my GP. 

chiarieds

Hi @ItsJeni - & it's great to welcome you to this community. I also have hEDS so do have some understanding, as this has not only affected myself, but children & grandchildren. Here's hoping you get on better with your new GP.

I've found this resource helpful in what GPs should consider in those that have hEDS: https://gptoolkit.ehlers-danlos.org/

Please let us know how you get on. I've had a fair bit of fighting in getting hEDS recognised by not only GPs but consultants in our family & (mainly) with associated disorders. Do please consider looking at the other resources on the Ehlers-Danlos Support UK website: https://www.ehlers-danlos.org/

ItsJeni

It's taken me since 2011 to get a diagnosis. I only got diagnosed 3 months ago. I've not been able to walk since then. It's absolutely ruined my life having such a late diagnosis. Thank you for the links, I will look at them now!

ItsJeni

@chiarieds I've just read those links and more and more is slotting into place. The subluxations, spinal issues, allergy issues, digestive system issues, headaches... How can so many doctors miss these connections?! And then the doctor that does diagnose me doesn't tell me what is linked?! It's genuinely frustrating how little information I've been given about my own condition and how to help myself. 

chiarieds

Unfortunately there are many things that can affect a person with hEDS - Drs don't realise that the connective tissue that's affected is everywhere in your body, so it can affect such issues as you mention, & they just don't look.

You saying about having a 'multitude of other things' just reflects how in so many ways hEDS can affect so many different parts of your body. I have a neurological issue (Chiari 1 Malformation) which can be associated with EDS in a few of us. 

It might sound strange, but I've learnt more about EDS from the American Syringomyelia & Chiari Alliance Project's website, particularly their past video conferences: https://asap.org/conferences/past-conference/ I also had a bit of prior serendipity in that from my research I thought Chiari 1 Malformation & EDS were associated, & a New York neurosurgeon I contacted was just beginning to see EDS in his Chiari patients, so we kept in touch. The UK is perhaps about a decade behind the USA as far as EDS goes.

Dr Anne Maitland is the one to watch about allergies in EDS e.g. : https://www.youtube.com/watch?v=Wv4TKEcJvuY 

it doesn't come up until nearly 20 mins in that she mentions EDS, but all of her video is worth watching, as are her others about EDS & Mast Cell Activation Disorder (MCAD).

hEDS can be way more complex than some of our UK Drs understand unfortunately; so much more than 'just' joint subluxations, so some don't have a grasp about potential comorbidities.

ItsJeni

@chiarieds you're an absolute wealth of information! Any links you have please post them here. I will take any help I can get ❤️