Ehlers Danlos Syndrome - Genetic Testing
I have just been referred to a specialist in London for genetic testing after 5 years of doctors ignoring my pain and symptoms. I meet all of the diagnostic criteria for hEDS, but my doctors want to rule out any of the rarer types that I meet some of the criteria of (specifically cEDS and clEDS).
Anyone who’s been through this process, what should I be expecting and do you have any tips for someone about to go through it?
I’ve been told there’s a wait but I have no idea how long. I’ll also have to travel across the country by train for each appointment, which is going to prove expensive on a uni student budget, not to mention disruptive to my education.
Anyone who’s been through this process, what should I be expecting and do you have any tips for someone about to go through it?
I’ve been told there’s a wait but I have no idea how long. I’ll also have to travel across the country by train for each appointment, which is going to prove expensive on a uni student budget, not to mention disruptive to my education.
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