Geneticist appointment

For over two years I have been working with my doctor to try and get into a specialist in Seattle. Dr. Ball, who is from Washington and is a geneticist that specializes in EDS came to the University of Utah to work. I got an appointment with him and was "officially" diagnosed with Ehlers Danlos. With EDS there are many different types. I was diagnosed with Classical EDS. Although I already knew my diagnosis, it was different hearing it from a specialist. It made it more real. There was no question that I had EDS and it was like I had to find acceptance in my diagnosis again. He went over all of the possible risks and symptoms with me and was very patient while I explained everything that was going on with my body. If I have learned anything it is that no one knows your body more than you and it is so important to pay attention. After listening to my symptoms he realized I may have more than just the EDS. He thinks there is a very good possibility that I could have MCAS-Mast Cell Activation Syndrome, which can be common in people with EDS. Along with Chiari Malformation and Postural Orthostatic Tachycardia Syndrome. He gave me a few referrals to different specialists and recommended that I get further testing done to make sure I do not have the Vascular EDS. Dr. Ball was amazing. It was such a great experience to speak with someone that knew SO much about EDS.