I've recently had surgery to remove multiple cylindromas from my scalp and face.
When I had my diagnosis just a couple of months ago it confirmed what I'd already begun to realise from trying to find out what was going on.
I've had lots of tears and it's been difficult coming to terms with the idea that I am going to look unusual as the condition progresses. I'm quite a shy person and find it difficult getting second looks and attention.
All the medical staff I've met have been really supportive and friendly and that's helped loads. I'm very grateful to my consultant for all the work he's done during surgery.
Initially, I found it difficult to tell my family but now they know, they've been wonderful and I've decided to be very open about saying what the lumps are when asked, but I've also bought myself a couple of hats which cover most of the condition at the moment and hopefully my confidence to go out in crowded places will improve soon.
I would like very much to be in contact with anyone else with this condition because it feels very lonely just now.