lichen sclerosis

I feel sorrier for you than air hostess! I get very nervous on long journeys, because of LS. I always take aisle seat when travelling alone!

Hi I've done it again. My post has disappeared before I posted it. If I post two please excuse me.

Have brilliant holidays Holiday Girl and Horses. Don't forget to treat well before you go and use those wipes if they agree with you. Keep well moisturised at all times. Hope you have itch free hols.

I've found that my LS is quite calm at the moment and after reading these posts guess what - I have recently finished a course of antibiotics. Will mention that to my dermatologist.

I'm thinking of trying to contact some older female celebrities to see if they would help us get this information out there. I am going to talk to my dermatologist about this in July when I see her. Anyone else any ideas about this? I think maybe we need to raise awareness so that the dermatologists can get more funding to help solve this problem.

Hey Horses,

What a great age your Dad is, good to have the longevity gene. I too think my Gran had LS too. She also had vitiligo like me. She used to have loads of creams in her bathroom.

My daughter has had lots of problems with recurrent thrush since a child, so I have had a talk with her about LS. She is going to mention it to her GP. I hope not for her sake.

Happy hols.

Hi Chrisy,

I don't know any celebrities myself, but I think it is a brilliant idea! It would have to be someone with plenty of courage!!

If only more doctors knew about LS, as I am convinced half the problem is catching it in the early stages. I was treated for thrush instead and was in agony and torment for a year or so.

Thank you for your kind remarks.

I don't know any myself but I am sure going to try to find out a way of contacting them. I might start with the papers as they always seem to know how to contact people. Will keep you all posted. If we all try we might get somewhere.

That sounds like a good idea just don't know anyone famous. Would be a brilliant subject for Loose Women but don't think they would let them discuss it. X I am still itch free and using the Hydramol every morning and occasionally the Dermovate at night. Have to see consultant on Monday but won't know biopsy results for another 5 weeks. It's lovely to be sleeping better as well .

Good luck with your results when they come. That is a brilliant idea about loose women. Will look into that. Thanks.

Hi,

Well I've done it. I have emailed the itv viewerservice@itv.com and requested if they have anyone who would be willing to front this for us and help us to make everyone aware of this disease. I am promised a reply within 5 working days. There was a phone number but not a Freephone and I have found in the past that my phone company charges the earth for premium rate lines. I also think this way they can research this before they contact me back. We shall see what happens. I got the details by entering loose women on the search engine if anyone else feels brave enough to join in. Will keep you updated.

Hi Eureka. the 0.05 dermovate is one of the strongest ones. If you were on 1 percent it might have been 1 % hydrocortisone? If that works for you, great.

Hi Chrisy,

Well done you! You have done incredibly well and I will be watching this spot to see what happens - from Australia or New Zealand!! Thank you on behalf of us all. xxx

Hi everyone, Just an update. Had an email back from ITV and my email has been passed to Loose Women for their help if they are interested in covering this problem. I have also got the address of an agent who might be able to help me with finding a celebrity who might help us. Watch this space.

Hi Chrisy

That's brilliant news hope someone thinks its important enough to take it up.

Well done x

Hi every one,

Just an update. Had an email asking who I wanted the email to go to. I said loose women and Gloria Hunniford for a start. I have been given her agents details. I will save them if I get no joy from Loose women I will contact the agent to see if they can help. Keep you up to date.

Chrisy

Hi,

I use Epaderm. It comes in big tubs too. It is more like goose grease but is an emollient so that it becomes a lovely silky washing agent when mixed with water. I transfer some to smaller tubs which you get with travel bottle sets or in well known chemists. I have a small one in my handbag with some in and use it to wash with after peeing. I literally use it like water to wash my parts. It is so soothing. I hope you find it nice like I do. I have heard of people not liking it as it is so like grease. My ls is much better since I started using it.

I too have lots of wart like things on my back. Really itchy. My husband helps me put cream on them when he is home but if he is not (he works away) I clean the architrave around my bedroom door and put some Epaderm at the right height and then rub my back on it. (Needs must) thought this might help those who do not have the luxury of a partner. Be careful though not to damage your back. This really works. Put an old top or t shirt on after to mop up extra cream if you need to. Oh yes it is easy to clean off as it mixes with water. I haven't noticed any damage to my architrave.