Hi EDS ers,
I have EDS Type unknown ( Up to now).
For years Doctors have been thinking I could suffer from marfan Syndrome.
I am very tall, Long limbed and have a long thin face.
Genetical testing was marfan negative. A skin biopsy although was EDS positive.
Is there anyone out there also having EDS with marfanoid Body Type? If so, which Type of EDS are you diagnosed with?
I am wondering if it is a special Type itself of EDS.