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I HAVE BEEN READING YOUR WEBSITE WITH GREAT ANTICIPATION...

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Guest
Guest

I HAVE BEEN READING YOUR WEBSITE WITH GREAT ANTICIPATION, AS I AM STILL NOT QUITE SURE AS HOW SERIOUS THIS CONDITION IS. I AM A 35 YEAR OLD FATHER TO A 7 YEAR OLD DAUGHTER WHO HAS BEEN DIAGNOSED WITH THIS DISEASE. BEFORE DIAGNOSIS WAS ESTABLISHED SHE WAS COMPLAINING OF A BURNING SENSATION WHILE BATHING, MAKING IT ALMOST IMPOSSIBLE FOR HER TO WASH PROPERLY AND CONTINUOUS ITCHING. AFTER MANY VISITS TO THE DOCTORS, PAEDIATRICIAN (TWICE) AND A GYNAECOLOGIST, WHO AFTER ROUGHLY 12 MONTHS OF SUFFERING MY DAUGHTER WAS EVENTUALLY DIAGNOSED WITH LICHEN SCLEROSUS.

AT THE MOMENT SHE IS BEING TREATED WITH DERMOVATE OINTMENT WHICH I APPLY WHEN SHE COMES OUT OF THE BATH ABOUT TWICE A WEEK.

I WASH HER HAIR IN THE SINK BEFORE SHE HAS A BATH THEN SHE WASHES HERSELF WITH DERMOL LOTION INSTEAD OF SOAP. I HAVE CHANGED MY WASHING POWDER TO NON - BIOLOGICAL AND ENCOURAGE HER TO DRINK MORE WATER INSTEAD OF FIZZY DRINKS.

ALL THIS DOES SEEM TO BE HELPING AS THE ITCHING HAS DRAMATICALLY DECREASED AS HAS THE SMELL AND NO MORE BURNING.

I AM EAGER TO KNOW IS THERE A CHARITY SET UP FOR CASH DONATIONS AS I WOULD LIKE TO DONATE A SMALL AMOUNT TOWARDS THE RESEARCH FOR A CURE IF THERE IS ONE.

[i:8b6f9975d7]This message was automatically imported from the original Patient Experience[/i:8b6f9975d7]

0 likes, 4 replies

4 Replies

  • Guest
    Guest

    Posted

    I know hoe you feel I have had this problem with my daughter now 10. It took three years to identify, after being called all sorts of things and many referrals. She used propaderm and is on twice a week maintenance programme.

    It is extremely iddicult to explain to ehr what it is about and I undeand your problems

    [i:8042d9b6bd]This message was automatically imported from the original Patient Experience[/i:8042d9b6bd]

  • Guest
    Guest

    Posted

    I am 47 yr old mal and suffer symptoms of Lichen Sclerosus. The medical journal tells me that this condition is not contagious but my eight year old daughter also suffers with sorenes. The doctors are just looking for infections of the kidney's

    Thanks to everyone for their contributions that help with the bigger picture. :roll:

    [i:c53f8bbe67]This message was automatically imported from the original Patient Experience[/i:c53f8bbe67]

  • Guest
    Guest

    Posted

    I was very interested to read of your experiences with your daughter.My daughter is now 15 and has been suffering these symptons since she was 6 or 7 yrs old. We have tried every cream and have been passed from pillar to post at the hospitals in an attempt to get a firm diagnosis.The last gyni we saw thought that once puberty set in she would be free from symptons as his understanding was that this condition onlt affects females before puberty or after the menopause.Reading all these entries on the web, that doesn't seem to follow through. However, my daughter is now waiting for a biopsy to secure a diagnosis and I am terribly anxious about such a procedure being carried out on her. I just wondered how you were getting on and whether your daughter was still suffering. Would love to hear from you.

    Susan

    [i:100f4faf3a]This message was automatically imported from the original Patient Experience[/i:100f4faf3a]

  • Guest
    Guest

    Posted

    Hello - its Fabia here, I run the National Lichen Sclerosus Support Group and I have only just found out that Patient UK has started this list.

    I have been running the support group for 10 years and I also run a telephone helpline and take calls regularly from the parents of children with LS.

    The helpline telephone number can be found at National Lichen Sclerosus Support Group

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