So it's official. 🎉🎉🎉 After months with only a working diagnosis of EDS III, I have finally had that diagnosis confirmed and made official.
I have Ehlers Danlos Syndrome type 3.
I feel incredibly relieved that after literally years of fighting for this I have my diagnosis.
I saw my new rheumatologist today, and I was kind of worried about it, but it went fantastically well.
I wasn't told anything I didn't already know, and my treatment won't change- but, with this diagnosis many more of my symptoms are explained, which they weren't under the diagnosis of Joint Hypermobility.
My health team and other medical professionals can also make better informed decisions about Surgery as and when I need it, as well as taking more precautions with Anesthesia, as its common to react badly, or for it just to not work with patients with EDS.
It also means that it is likely that I have a member of my family who (possibly historicaly) also has it.
My bet is on my mother because she scores the same as me on the Beighton scale and anesthetic doesn't work properly; although bar that she is non symptomatic.
Both sides of my family have Hypermobility, with my paternal cousins and my biological brother being as or almost as bendy as me, just mainly non symptomatic.
My brother does get some joint pain and minor subluxations but has never sublocated or dislocated anything, he's just bendy thankfully.
I am a little sad because a part of me was really hoping it was just Hypermobility, which would mean it was much safer to have biological children. Most people with Hypermobility have zero problems like the rest of my family.
Unfortunately as it is EDS, the inheritance rate is higher, as is the possibility of them being as symptomatic as myself.
I wanted to adopt due to my health anyway but I guess it's just the final nail in that particular coffin.
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