Last Updated 2022 This is my story it is very personal to me and very difficult for me to share. When I was 8 years old, I started having pain in my right knee. I was in gymnastics and dance at the time and my parents thought it might be an injury related to my extracurriculars, so they took me to the pediatric orthopedic physician to see what was wrong, the doctor found nothing that looked wrong, and recommended rest. I stopped going to gymnastics and dance and the pain did not stop. So, my parents made one more orthopedic appointment, and nothing was found, at this point, I stopped all physical activities because I was in so much pain and started using crutches to alleviate the pain in my right leg. My parents were frustrated and confused, one orthopedic doctor said it was a nerve condition and prescribed medication to stop the nerves from sending pain signals to my brain. That did not seem to be the answer because the pain continued despite the medication at that point my parents took me to another orthopedic specialist, this time the doctor called my parents the evening after my appointment and told them it was in my head and there was absolutely nothing physically wrong with me. I was only 9 years old, and this as a kid was extremely hurtful, I trusted doctors and believed they were there to help me. This was when I thought there really was something wrong with me not physically but mentally, I mean he was a doctor, and I was just a child. The pain was so bad that it kept me from doing what I loved, I could not participate in dance, and gymnastics and I could not even walk through Disney World without being in terrible pain, I did not understand how a doctor could think this was all in my head, the pain was keeping me from doing everything I loved and isolated me from other kids. I started to lose confidence in myself and put up a wall.
I used crutches on and off for 4 years to help with the pain in my right knee/leg, I would have adults and kids alike constantly question my use of crutches because they could not see a visible injury. These years were incredibly hard on me, I was doubted by adults, doctors, and my peers. I had many classmates come up to me and tell me I was faking it and just wanted attention. I remember one time when a kid in my class came and threw my crutches, and my lunch box over the railing at lunch and told me to go get them because he knew I could walk, I felt so isolated and alone at this point, with adults doubting me and kids bullying me. One thing that kept me going was my parent’s belief in me and their persistence to find an answer.
A friend of my parents recommended a surgeon in Tampa that specialized in specific conditions of the bones. This orthopedic doctor seemed to have the answers after an examination and x-rays he explained that my legs and knees had a very significant internal rotation called miserable malalignment syndrome, he told me this was causing my patella subluxation, and pain. He advised that because I was 12 braces were no longer an option for correction and at this point, he recommended a bi-lateral osteotomy of my femur and tibia to correct the rotation. I was devasted but hopeful about the diagnosis. The surgery was incredibly scary, but I was hoping it would stop the pain I was having, the surgery entailed the rotation of both femurs outward and tibias inward. My parents were hesitant at first, they took some time and did a lot of research and spoke with prior patients of the doctor, with all that information they felt that the surgery would not only correct my alignment but stop my pain. My surgery was on 4/8/2019, a day that I will never forget. I was 12 at the time, the procedure I had is called a femoral tibial bilateral osteotomy. I had an epidural to make sure I did not feel any pain in my lower body after the surgery. Unfortunately, the epidural stopped working after one day and the medications did not work for me, it was incredibly painful, and the medications caused severe side effects. I ended up spending 7 days in the hospital when I was only supposed to spend 3 days maximum. The surgery recovery process was incredibly hard, I was in straight leg casts for 12 weeks and after the casts were removed it took me 6 months to actually walk again and a year to walk without assistance. I was told that as soon as the cast came off it would only take me 3 months to fully recover. This unfortunately was not the case for me, my recovery was difficult and very long. I struggled mentally and physically during this time.
Unfortunately, my pain persisted and seem to spread to other joints after my recovery, at this point my mom decided to take me to see a Geneticist in North Florida, he specialized in rare genetic conditions. It was a lengthy 3-month waiting period to see him. He talked to me and my parents about my pain, previous surgery, and the length of the recovery. After an evaluation and many genetic tests, he diagnosed me with Ehlers-Danlos Syndrome a rare genetic condition. He went through everything I had been through, the pain in my joints, internal rotation of my legs, resistance and reactions to medications, bruising easily, partial dislocations of my knees, lengthy recovery time, and so many other things I had dealt with they were all related to Ehlers-Danlos Syndrome. It was a relief to know the cause but unfortunately, there is no cure for EDS, it is a genetic connective-tissue disorder, that impacts your entire body, from your internal organs to your joints, it causes joint partial and full dislocations, chronic pain and so many other problems, there are thirteen classifications of Ehlers-Danlos. I currently live with mine daily, in my photos and in person you see my smile, it is often a mask, I live in a chronic state of pain. I am learning to live with my condition, but I still want to spread awareness because people cannot see my illness and always assume I am fine. I don’t share or complain about my pain with others any longer because of my past, my smile hides so much. I am only one of the many faces of Ehlers-Danlos Syndrome and other invisible diseases that are out there. I want to share my story and the stories of others so that we can go from invisible to no longer being invisible.