My Story with Classical EDS (cEDS) – Rosanna

TW – Babyloss

In 1965, when I was seventeen, I had my first major operation, to repair my left knee cap. I was in hospital for six weeks because the wound got infected. In the end, the operation didn’t work anyway, so at the age of eighteen I had the kneecap removed. This made things worse, and then osteoarthritis set in.

When I got married in 1969, I started using a wheelchair because I kept falling and breaking bones. I had so many operations from then on for all sorts of things, and two double prolapses within a few years of each other. I had terrible gastric problems, including a stomach ulcer and hiatus hernia which was operated on in December 2012, when I moved to Cumbria from the North East.

My eldest daughter was born in 1971, after which I unfortunately had nine miscarriages. I carried a little boy to 26 weeks and then lost him, before having my second daughter in 1977. She had to be stitched in by sewing around the entrance to my womb, the stiches released on the day she was due.

In 2010, I moved again, and my new GP arranged for me to see a surgeon at the Cumberland Infirmary for a hiatus hernia. He decided to operate quickly, but it didn’t go well: I had the first operation on 21 December 2012, but I was ill on the weekend and the subsequent x-ray and scans showed that the hernia had pulled everything from my stomach into my chest. On Christmas eve, the day before my 65th birthday, I had a major operation to rebuild my oesophagus with pigskin and mesh. More operations followed but my body kept rejecting the feeding tubes, so in the end I had up to four fifths of my stomach removed.

My surgeon was at his wits’ end. Eventually, he sent me to see a professor at Durham University Hospital. After explaining everything to him, he knew straight away what it was, and I was finally diagnosed classical EDS in 2016.

I am still in pain – I have a replacement right knee, my right leg is fused, and I am getting my left shoulder done. I get frequent bladder infections, and I have had another double prolapse. As a result, and I continue to see a gastroenterologist and an orthopaedic surgeon. I also have osteoporosis, pernicious anaemia and asthma.

I hope reading about my medical history helps someone.  Also, my hope for the future is for more people to get help. I’m getting old now, but younger people should be diagnosed quicker. And I wish people would talk to me and not my daughter when she pushes my wheelchair – they seem to think I can’t answer for myself! My daughter has EDS as well.

I haven’t let EDS dominate my life. I still garden, even when I am in bad pain, and I used to show fuchsias at flower shows with help from my daughter.

I joined The Ehlers-Danlos Support UK after talking to an anaesthetist who knew about it (I saw him prior to operations for my reflux). Joining has helped a lot – I can now talk to other people who have EDS, especially during the night when I can’t sleep.