The story of Clare
In April 2016 at 43 my world changed!
After many years of being misdiagnosed I finally got the diagnosis of not just 1 but 2 rare diseases I had or anyone else I knew had heard of.
Lichen sclerosus is a skin disease that mostly affects the vulva.
Because I hadn’t been diagnosed after suffering with symptoms since about 5 years old it turned to cancer . If LS is left untreated like mine was then the cancer risk is higher.
Getting told you have cancer is a shock but getting one you had never heard of or know anyone with it makes it a lonely place.
Because I had not heard of either conditions or that many health professionals recognise LS my cancer had a chance to spread to stage 3 which after 4 surgery’s and radiotherapy twice I’m now left with many life changing side affects and only a 40% chance of living 5 years or more.
I have now been in remission for nearly 5 years but still have LS as there is no cure and it’s hard to get in remission.
For the last 4 years I have been raising awareness of both these rare vulval diseases so others know that it’s important to check your vulva like we are told to check our breasts. Get to know your normal so any changes for you then see your doctor.