I HAVE BEEN READING YOUR WEBSITE WITH GREAT ANTICIPATION...
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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
Guest
Posted
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
Posted
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
Posted
Susan
[i:100f4faf3a]This message was automatically imported from the original Patient Experience[/i:100f4faf3a]
Guest
Posted
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