Ehlers-Danlos Syndrome on the NHS

So I should be receiving my FLR(M) soon (fingers crossed that it gets approved!) and I will be registering at the GP. I have Ehlers-Danlos Syndrome, a connective tissue disorder that is relatively rare/underdiagnosed, and I'm not sure what to expect from the NHS. Back in the States most medical practitioners I came into contact with were not very informed about EDS, so I'm expecting that to be the same here.

I have a letter from a geneticist from UCONN Medical Center in the US describing my diagnosis, but I guess my concern is that won't be good enough and I will need to be re-diagnosed all over again on the NHS. I know for ADHD in adults the NHS requires you to go through diagnosis all over again to get medication. Is that what is going to happen with EDS as well, or am I being anxious for no reason?

So I should be receiving my FLR(M) soon (fingers crossed that it gets approved!) and I will be registering at the GP. I have Ehlers-Danlos Syndrome, a connective tissue disorder that is relatively rare/underdiagnosed, and I'm not sure what to expect from the NHS. Back in the States most medical practitioners I came into contact with were not very informed about EDS, so I'm expecting that to be the same here.

I have a letter from a geneticist from UCONN Medical Center in the US describing my diagnosis, but I guess my concern is that won't be good enough and I will need to be re-diagnosed all over again on the NHS. I know for ADHD in adults the NHS requires you to go through diagnosis all over again to get medication. Is that what is going to happen with EDS as well, or am I being anxious for no reason?

Hi Midori, we have a fellow sufferer here on the forum. She'll be along soon to share her experiences I'm sure. 

*waves*

I definitely recommend you join the ehlers danlos support UK website and find your local support groups on Facebook. They will be your biggest asset for advice relevant to where you live.

I brought ALL my medical records, and my GP wanted none of them... They are forcing me to the bottom of their pain ladder for medication, so I no longer have access to the meds that made life bearable. And I'll find out next week if they will help me with the accommodation I need to be able to work in this country. But for some of my outstanding issues that have needed referrals I got those quickly and without much hassle. So it's been a really stressful mixed bag for care.

The good news is the NHS recently released a GP toolkit for EDS that is available for them to download. The bad news is that much like the states, there's no standard care pathway and mainly private specialists who are crazy expensive. If you have any specific questions you don't want to share publicly feel free to take it to PM