My name is Domingos, I’m 16 and I’m from Rio Grande do Sul, but I live in Curitiba, Brasil.
My ankle pain started when I was 12, at first my PE teacher thought I was pretending, because I started to be unwell when doing physical activities. I started to feel a lot of pain on my ankles when waking up or when I stood still for a long time. My mom got worried and took me to a doctor, he examined me and concluded that I was with tendon shortening, then I started doing physiotherapy and swimming.
Two years passed and the pain got stronger and stronger, to a point that I started having frequent crises that made me go to the hospital to take anti-inflammatories. The pain and loss of movement in my ankle became so severe that I was referred to a pediatric rheumatologist. The rheumatologist suspected that I might have EDS and made a clinical diagnosis, then referred me to a geneticist. The Exoma Test confirmed classical Ehlers-Danlos syndrome (cEDS).
At this point I had already been diagnosed with bilateral Osteochondritis Dissecans (level IV) in the domus of the talus. So I went to an orthopedist who decided to try a conservative treatment first, which consisted of applying hyaluronic acid to both ankles and immobilizing them for two months. When the immobilization cast was removed, he requested 30 physiotherapy sessions so that I could relearn how to walk correctly. Also the doctor requested another MRI scan after 4 months to see if there has been any bone healing or if I need to undergo two surgeries, one on each ankle.
I leave my testimony to help other people who suffer from pain and take a long time to get the correct diagnosis, sometimes being discredited in their symptoms and treated in the wrong way. I hope that the professionals who read this will consider the possibility of both cEDS and Osteochondritis Dissecans in adolescents with ankle pain. Many doctors concluded that I was experiencing “growing pains”, when in fact I suffer from a rare and serious problem that compromises my mobility and well-being.
