“There was no awareness campaign for Lichen Sclerosus or Vulval cancer so we started our own.”
But what is Lichen Sclerosus? Clare Baumhauer tells us more about her story,
I was diagnosed in 2016 with lichen sclerosus and stage 3 vulval cancer.
Shocking and scary to get diagnosed with cancer but to be told you have one that you hadn’t heard of and a skin condition that had gone undiagnosed since i was a child was more shocking.
This made me angry that my lichen sclerosus had been missed so many times over the years , it might not have prevented my cancer but would have been caught early and not at stage 3 with more invasive treatment and life changing side affects, or would it?
Even in the medical profession not much is known.
Nurses who do our smear tests aren’t trained so don’t know about LS , I know as I’ve had 8 smear tests over the years and my LS was never picked up.
Those that are diagnosed with LS aren’t always told about the cancer risk, some have been told they are to young or there is no link!
Most are not referred to a vulva specialist in LS, the correct advice is not given and they are not even followed up after their first appointment. Medical professionals are not using the guidelines from the British Association of Dermatologists (BAD) so patients are just left to get on with it.
This isn’t good enough!
They’re putting patients at risk!
They’re dying as the cancer is diagnosed to late!
How do I know this?
I started a vulva cancer support group and also found Emma Norman who runs an LS support group which I now help Admin on.
We see all the bad advice the members are getting and that many aren’t told about the cancer risk, or its told as if it’s no big deal. I have lost a few members of my group because they were not told about the cancer risk after being diagnosed with LS or were diagnosed to late!
So we got together and developed a website and awareness pages, this is the second year of our #knowyourvulva campaign to help raise awareness of Lichen Sclerosus and Vulval cancer.
If you want to know more then feel free to hit the links below!
Here are some useful links
British Association Dermatologist (BAD)