Ep.136 It's time to lift the stigma around Lichen Sclerosus and Vulva Cancer with Kay Binnersley

Kay Binnersley is an award winning hairdresser and bridal hairstylist who has been in the industry for over 37 years. Working for herself from the age of 18, first as a freelancer then the last 26 years in her own salon.

But Kay isn't here to talk about hair, she's here to help lift the stigma around open up the conversation around Lichen Sclerosus and Vulva cancer.

If you're sat there thinking you've never heard of Lichen Sclerosus, neither had Kay until she was diagnosed with the condition recently. She is now on a mission to help educate other women especially as it's a subject no one wants to talk about. Conversations around breast cancer are now positively shared, Deborah James did an amazing job at lifting the taboo around bowel cancer yet mention the 'Vulva' word and we still find it uncomfortable.

So what is Lichen Sclerosus?

Lichen sclerosus is a long-term (chronic) skin condition. It causes the skin to become thin, white, and wrinkly. Lichen sclerosus may occur in men, women, and children at any age. But it is most common in women older than age 50, which is even more reason for us to be talking about it!

The symptoms of vulval LS vary from person to person. Sometimes, it causes no symptoms and is discovered during tests for other health problems.

The affected area of the vulva may:

• be very itchy and sore, which may be worse at night
• change colour, becoming pale or white
• develop small areas of bruising that look like blood blisters
• be more fragile than normal skin and possibly split

The causes of vulval LS are not known. It is not possible to get LS through sexual contact. It is not a sexually transmitted disease and is not infectious. LS is also not caused by hormonal problems or an allergic reaction.

Women over 50 are often struggling with other issues like cystitis, vaginal dryness and thrush which can all masque these symptoms and as not enough is known about the condition it can often be left undiagnosed. If left there is a chance it can lead to vulva cancer so it's so important we are made aware of these symptoms. Knowledge is power!

Topics covered-

• Who is Kay Binnersley?
• Passion for hair
• First symptoms- diagnosis
• Dealing with pain
• The impact it had on Kay's confidence and daily life
• Knowledge is power
• Statistics (1 in 100 women will be diagnosed with it and 5 in 100 will turn cancerous)
• Why do we find it so difficult to call our vulva by it's real name?
• How can we lift the stigma around this
• The petition to gain funding for research for a cure and support for those diagnosed.
• Why Kay is using her voice to create awareness around this condition
• Don't put off going to the doctors if you are worried about any symptoms
• Kays positive attitude to life

There is currently no cure, no remission, for Lichen Sclerosus only strong steroid ointments which put condition into remission at best. There is some evidence to suggest it may be an auto immune disorder and whilst it can affect men , it is mainly seen in women. Sufferers can live in pain and be affected physically and mentally, but it can be misdiagnosed due to lack of awareness and can increase the risk of certain cancers.

Sign the petition

There is currently no funding available for research to find a cure , support patients and help raise awareness. If you'd like to sign the petition to get this conversation on the table here's the link, your support is much appreciated.

https://petition.parliament.uk/petitions/632780

What does Free to Be mean to Kay?

"Free to be the person you really want to be, with no holds or ties and no fears"

What does Free to Be mean to you?

If you would like to connect with Kay visit-

kaybinnersleyhair.co.uk 

You can also follow her -

Facebook Kay binnersley hair 

Instagram Kay binnersley hair

I'll be back with one more episode before taking a summer break

Keep being fabulous!

Rachel x