Spread the word

Great Letter! I haven't even had a standard reply yet though.

Happy new year everyone.

I've been ok over Christmas even though I've eaten more sugar and drunk more wine than usual. Have kept it limited though, and back to my normal diet again now.

2015 will be my year of campaigning, now that things have calmed down. I won't walk past a pharmacy without going in and having a chat. That's my New Year Resolution.

 

I've been in to two pharmacies this morning. The first one had a paitent with LS last week and had heard of it. She wasn't really interested in me telling her much more about it though her knowledge was sketchy - but she did suggest that here in the UK pharmacists have branch groups and meet up monthly. She suggested speaking at one of them. I will look on the Royal College website and see if I can find out where one is in my area.

The second pharmacy I went into had a young female trainee on her final year placement. She was utterly shocked, looked it up online while I was there and totally took on board the implications of missed diagnosis. I think that conversation will go a lot further.

I wasn't very subtle, I just marched in and asked to have a private conversation with a female pharmacist (on the basis that sufferers are more likely to talk to another woman, and also the male one didn't sound very open minded)

I salute your subtle approach - it would have worked much better than my bull-in-a-china-shop with the first one!

Onward! I'll let you know what I find out about branches.

Ok I've found it, Go to the website of the Royal Pharmacutical Society and look for Local Practice Forums, they are all listed by area. I went to the one in my area and found the CPD (Continuing Professional Development) coordinator.

Below is the text of my e-mail

Dear .....

Here in Bristol we are lucky to have one of the few Vulval Dermatology departments in the country. One of the most common conditions which they treat is vulval Licchen Sclerosis. It is a devastating condition which causes atrophy of the genitalia, including loss of labia, shrinking of the vagina, painful or inability to have sex, tearing, sores... I could go on and on but the reason that I'm writing is that, although it has been estimated to affect between 1 in 200 and 1 in 1,000 women (hardly rare), it is almost unknown by GPs and Pharmacists.

Most of the women in my support group have been mis-diagnosed for up to 10 years, commonly with recurring thrush (in women with low eoestrogen), STDs (imagine the impact on a relationship) or hypochondria. It is an auto-imune condition which attacks any age, from very young girls through to post menopausal women. If diagnosed and treated within two years complete remission is possible. For the rest of us it is a condition which we will have for the rest of our lives which needs to be managed with steroids and checked by an expert six monthly for pre-cancerous changes.

Given that pharmacists are often the first port of call for women who think they may have thrush, or need a bit of extra lubrication for sex, please could you arrange a CPD about this devastating condition. The doctor I see in St Michels is a Dr Jane Sansom. I am not a confident public speaker but feel so strongly that no other women should have to suffer this through ignorance, that I would be willing to explain to a group of pharmacists what life is like as a sufferer.

Don't just take my word for it; there are many threads on patient.info, from people of all nationalities, I have put links to some of them below. The web lecture is by an American doctor who treats many, many LS patients and is doing research. It is the only bit of information of this type, at this level that I could find. The second one is a discussion of some of the impacts of living with LS; sex is only one of them, but it is the one that makes people sit up and listen! and the last one is a general discussion by people of all ages and nationalities who suffer from this.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I would be glad to give any further information that I can if you wish to contact me.

(I've deleted the websites because I think the moderators don't allow them, but the two discussion websites had a broad range of the issues we face and I thought they would have more impact than my voice alone - I hope no one  minds)

Bridge

Excellent work Bridge.  I am so impressed.  will try to follow suit in a few days and do some research of my own into the pharmacists.  Recovering from visit to hospital at moment which has been very tiring but an excellent outcome.  I am going to be out for a few days as I have been home for the past two months following my foot operation which has been a great success so I have lots of things to catch up on.

Update to my latest visit to Dermatologist.  I have had the second all clear check up and she has now referred me back to my GP for twice annual check ups as she said I was managing the condition exceptionally well.  She asked how I treat myself and I mentioned the bicarbonate of soda citzbath that I use and the usual clob and moisturise (I use Epaderm) as she described.  She was very interested in the Bicarbonate of Soda treatment.  I also mentioned the possibility of posters for hospitals and toilets.  She said someone else had mentioned this so I think another member of this site might be one of her patients.  North East UK. As I had asked as well she said she would look into this approach as she thought it a wonderful idea.  She also told me that she has at least two women at every clinic with the same condition.  Definately not rare.  I will be making sure that any GP that checks me out knows what they are looking for, if not I will be educating them, taking photos with me to help.  I am kind of sorry that I have been referred back to GP as I found confidence in being seen by someone who knows what they are looking for.