Hello! I’m Hannah.
I’m 23 years old and I have a rare skin condition called hydroa vacciaforme.
Hydroa vacciaforme is a photosensitive condition and is triggered by the UVA and UVA rays of the sun. It makes my skin blister and boil, leaving behind scars and thin areas of skin.
There is no cure for my condition and no treatments; it’s so rare that there are only 6 people in the UK that have it, myself being the worst one and also the patient that has had it the longest!
I’ve had this condition for 17 years and in that time, unfortunately, I have found nothing that helps my skin long term. However UV sun protection clothing is helpful to protect my head and my hands!
Thank you Hannah for helping raise awareness for skin conditions by sharing your story with us and our Solbari Community.
The Solbari Team
Having grown up in a very active family, from a very early age I was participating in team sports whether it be football, tee-ball or cricket. My parents taught me the importance of using sun cream and zinc to protect my face, but also the benefit of wearing a long sleeve shirt to cover my arms, and a bucket hat or broad brim hat to keep the sun off my neck and ears.