My name Ross McRae I’m from Scotland just about to turn 21. I was diagnosed about 14 years ago maybe longer with Cowden’s Syndrome. At the time of diagnosis, I was one of the only cases known about in Scotland and possibly the UK. My symptoms are maybe considered minor compared to maybe some of the other stories you may have heard but they still present their own challenges.
My symptoms vary from skin tags to lumps in various places. The biggest challenge was growing up with a large head size as it resulted in me being heavily bullied when younger. The condition also provides additional challenges ranging from insecurity to scar pain or body stiffness. I’ve had half a dozen operations and once contracted a nasty infection that made me nearly seriously ill.
The reason I’m writing to you is I wanted to share my story and hope that I can help raise awareness of this, maybe find out if you can put me in touch with some people maybe in the UK or elsewhere who are familiar with the subject of Cowden’s as well as learn and hopefully be kept updated with what is happening in the states in terms of treatments and research.