My name is Kayla Ellis. I am 26 years old and live with complicated and continuously changing disabilities. I am a bit of a medical mystery! I have a long list of diagnoses, but my doctors believe we are missing something bigger that is causing those diagnoses. Most of my specialists believe I have some sort of connective tissue disorder or something new that has not yet been seen before. 10 separate doctors believe that I have Hypermobility Ehlers-Danlos Syndrome. Unfortunately, where I live (Maine) has limited doctors and resources, which means I need to travel out of state for diagnoses, tests, and treatment. Not only will I need to travel, but I will also need to pay out of pocket, as most of these specialist clinics do not accept my health insurance or any insurance at all!

I am hoping to raise funds to afford an EDS clinic in New Hampshire. Their website lists the cost for the first two appointments, but I am not sure how much further testing would be, and this does not include the cost of travel.

A little bit about me: I cannot drive, I use mobility aids such as KAFO leg braces, wrist brace, crutches, and a wheelchair. I get IV infusions every 4 weeks for my IBD. I am continuously injuring myself when I move/ try to walk due to my hypermobility. I have torn multiple ligaments and tendons, and even had my first non surgical bone break in 2023 just from walking. I am currently getting ready for a total ankle replacement surgery; this will be my 15th surgery on just my legs, feet, and ankles. A photo is provided of the type of implant I will be getting to replace my ankle bones. The model is clear to get a better view of the implant.

I am also in the middle of filing an appeal for disability.

I have a unique form of hypermobility syndrome, small fiber neuropathy, POTS, feet and ankle deformities, Fibromyalgia, Arthritis, MTHFR, multifactorial gait problem, Crohn’s disease, and more. My disabilities affect all of my body, and I have really been struggling to keep up with my day-to-day life.

I have been working really hard to try and get my health under control while also trying to get approved for disability.

I believe this clinic could be the first step in the right direction for the right treatment and the help I need.