Email received yesterday to Hey Clinic PA Brittany, and physical therapist Rob, from “Mare”:

Hey Rob and Brittany,
 
I just returned from my appointment with Dr. Evans (UNC geneticist) and he confirmed that I do have Ehlers-Danlos Syndrome, type 3 (hypermobile). First, I want to thank Brittany for taking my concerns seriously and being proactive. You referred me to Rob, who then immediately pinpointed the hypermobility issue, thus setting the course for the diagnosis I’ve been searching for…for soooo long! This diagnosis now frees me to work on core strengthening with Rob (let’s keep it gentle!!!) and to receive proper long-term medical treatment. Dr. Evans gave me the names of two internists there at UNC Chapel Hill, who I will use as my “medical managers”, for lack of a better way to say it. I don’t want to come off as schmultzy, but I do want to thank you both for being the key players in getting me on a track to wellness. I feel as if a huge burden has been lifted…and wanted to share my joy with you both! Once I get to a point of feeling stronger and having adequate pain control, I think I’ll get involved in patient advocacy or supporting the EDS foundation in any way I can. I was involved in a similar fashion with the ACS after I recovered from all of my breast cancer treatments some years ago, and it was very fulfilling and meaningful work. If I can help others struggling to get a diagnosis, or needing help in any way, then that’s what I am going to do. I realize that EDS is a rare condition, but please keep in mind, if another “Mary” walks through your doors, with clean x-rays and MRI’s, complaining of diffuse, debilitating joint pain, he or she may just have this condition, or one similar to it. (see? I’m already at work!) Thanks again to you both…Rob, I’ll talk to you later, and Brittany, I’ll call you if any more back issues arise.
 
Big hugs to you both….
 
Mare