This is a list of potential specialists who may be required for your medical team and each does. Specialist doctors require a referral to see be seen. These referrals can be made from your General Practitioner (will last 12 months) or another specialist (will last 3 months). You will need to get a new referral each time your referral expires. So ensure your referrals are up to date. Most specialists will let you know if you need an updated referral for your next appointment - especially if it's a few months in the future.
While specialist work within one specialised area of the body there are still hundreds of medical disorders within each speciality. So that doesn't mean they will know about EDS and may only work with very specific issues (subspecialties) that they mainly deal with. It's important to ensure you are seeing a specialist with awareness and experience with EDS. Your GP or other specialists may have some ideas on who is best to see as do a lot of support groups through other EDS patients' experiences. Caution is needed with recommendations as just because one doctor worked well with one patient does not mean they will be good for you and vice versa. Sometimes personality will be a big factor for patients and they will rate their experience based on this. Your experience with the doctor may vary greatly.
If you are a specialist and/or allied health professional who works with Ehlers-Danlos Syndromes and want to be part of our Health Professional List available on our support group please go here