Ehlers-Danlos Syndrome Online Support Group

Late diagnosis


Hi I am 63 years old and live in New Zealand. My brain, mind, attitude is of a 40 year old. Unfotunately my body thinks otherwise! It is so difficult coming to terms with a diagnosis at the age of 61. Even though I knew I was hypermobile, and am sporting metal inserts, and numerous surgical scars, I will not let this diagnosis change my attitude.
As I become more acquainted with EDS, I am discovering more and more characteristics (for want of a better word) of EDS. Aside from the most common trait, hypermobility, I now recognise the less obvious. Gastrointestinal, mitral valve prolapse and I now wonder if my re-occurring bouts of laryngitis ever since I was young, are part and parcel of EDS. I used to love singing and was told I had a lovely voice - alas not now! I can’t hold a tune without it giving out on me! There ends my opera career!!


I was diagnosed at 62 when toes on both feet started spontaneously dislocating, leading to the amputation of toes 2,3,4 on both feet. I have also suffered from laryngitis most of my life, but on February 2, 2016, I awoke with one of the worst cases ever. I have had laryngitis ever since then. I’ve had vocal cord biopsies but no definitive diagnosis was found. I also loved to sing, so I understand your situation very well. It’s very frustrating. I never sang opera but I I now hang loose because I can’t hang ten! :call_me_hand: