Multiple cylindroma are multiple benign skin tumours. They continue to grow and spread, mainly affecting the face and scalp. Currently the only treatment option is repeated surgery. This is distressing and painful, and results in increasing scarring. One day, I hope, there will be non surgical options available.
When I was first diagnosed, I thought my world had come to an end. I tried searching for information online, but it brought up many frightening images, as well as unhelpful information. There were no leaflets available or support groups. I had so many questions that could not be answered. Nothing I read seemed to reflect my personal experience of living with this condition.
After some time, I accepted the diagnosis. I realised that whilst some days are bad, the good days needed to be very good. As a result between surgeries I plan lots of treats and outings. My friends and family have been amazing and understanding. Mostly I cope well, but sometimes unexpected moments can catch me out. When I visit the dentist or optician or hairdresser, I find myself having to repeatedly explain as my face and scalp can be very painful at times with even the lightest touch.
I have a wonderful NHS surgeon, who has already done extensive work on my face and scalp, and he teaches others about the condition. Having the same surgeon every time is very important to me. We have built up trust, and he understands my decisions and preferences. These are listened to and we make difficult choices together.
Along with another person, I have started a very small Facebook support group for those with the condition. This is a space where the multiple cylindroma community can share our experiences and thoughts whilst helping each other through all the ups and downs. We are not medical professionals so cannot give advice or medical information, but we are a group of people who understand what it’s like and hope nobody else will feel alone now.
For many years I was a teacher, but now work from home as a part time administrative assistant. I keep extra busy with various community volunteer roles and enjoy photography as part of an online tree and plant course, which I began whilst recovering at home from surgery. I also enjoy canoeing, camping and baking.
Multiple Cylindromas Support Group can be found here.