Helpline 07939 046 030

Dan’s Story

28 May 2019

Dan's Story

I was diagnosed with NF1 when I was 4 years old, my parents noticed freckles on my body and under my arms, so I went to the hospital to check what these spots were which is when I was diagnosed. My parents were also tested to see if they had NF1 so they could find out who I may have inherited my condition from. However, the tests showed neither of them had any form of NF, so this therefore meant I was the first to be affected by NF in my family.

At 17 I was diagnosed with haemangioma, when a red lump was found on my skin. I later had the lump removed as it kept getting caught on things. When people look at me 
they wouldn't associate myself with having either NF1 or haemangioma, as the only symptoms I ever show are the number of spots I have across my body. I want people to know that NF1 can manifest itself in many different shapes and forms.

" I want people to know that NF1 comes in all types of ways."

– Dan