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Diagnosing Eds


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My daughters were just diagnosed with EDS Type III (Hypermobility Type) a couple of weeks ago by Dr. Jaradeh at Stanford University. Their symptoms plus the fact that he picked up my oldest daughter's leg and said "oh my". He cautioned her to be careful with her joints because she was so hypermobile that they would easily sublux. It took him all of about 5 minutes to put it together. Same for her younger sister. They are 19 and 17 and have had symptoms pretty much all of their lives. They had seen a neurologist at UCSF and a team of geneticists who would never commit to a diagnosis. Dr. Jaradeh (a neurologist who specializes in Autonomic Dysfunction and sees several patients a week with EDS) could tell right away. There is always a difference between a good doctor and a great one. He is one of the "greats".

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My EDS type III was diagnosed by a rheumatologist back in 2008. The POTS doctor I saw at Mayo kind of confirmed the diagnosis. However, these diagnoses were based purely on clinical exam, and many of the other specialists I've seen recently haven't wanted to accept these as definitive diagnoses, because they were made clinically and weren't done by a geneticist. In 2008, I was told there really aren't blood tests to diagnose EDS type III, but there is testing for the other types. So, I'm going to be seeing a geneticist who specializes in EDS soon just to make absolutely sure it truly is type III, and not one of the other hypermobility syndromes. It will also allow me to check for some of the complications that go along with EDS (like hypercoagulability syndromes and things like that).

There are geneticists that specialize in EDS, or have worked with a lot of EDS cases. If you can find one like that, that might be a good route to go. General geneticists without an interest in EDS can be kind of hit or miss, from what I've heard.

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