OCULAR CICATRICIAL PEMPHIGOID

Posted by Margaret Rizza on July 19, 1999 at 17:07:06
I NEED TO KNOW AS MUCH INFORMATION AS POSSIBLE ON THE ABOVE EYE CONDITION. MY FRIEND HAS BEEN RECENTLY DIAGNOSED - ALREADY ONE EYE HAS CLOSED OVER - SHE HAS BEEN INFORMED THAT THERE IS NO WAY TO IMPROVE THE DAMAGED EYE AND THAT TREATMENT MAY NOW STOP ANY FURTHER DAMAGE. PLEASE TRY TO ANSWER THESE FEW QUESTIONS OR SUGGEST BOOKS ETC THAT SHE CAN REFER TO:
QUESTION 1    CAN SHE EXPECT ANY IMPROVEMENT TO THE DAMAGED EYE?
QUESTION 2    ARE THERE WAYS OF MAKING CONTACT WITH OTHER    
              SUFFERERS
QUESTION 3    ARE THERE ANY TRIAL OR NEW MEDICINES OR OTHER
              TYPES OF TREATMENT THAT SHE SHOULD KNOW ABOUT
QUESTION 4    WHAT ARE THE LONG TERM PROGNOSIS, CAN THIS
              CONDITION BE LIFE THREATENING
QUESTION 5    WHAT OTHER INFORMATION CAN YOU GIVE HER ABOUT
              THIS CONDITION
PLEASE PLEASE HELP
THANK-YOU



Posted by HFHS MD-JL on July 20, 1999 at 20:38:41
The current treatment for the condition is a drug called Dapsone.  The drug has to be monitored closely and in our institution we have someone who administers and follows this medication.  This medicine halts the intense inflammatory component assoc with it.  If it works it should halt the progression but it may not improve any previous damage.  If this drug does not work there are others in the same class that may.  As I mentioned this condition causes intense inflammation and scarring of the conjunctiva and this causes inward turning of the lid or entropion.  This results in the lashes rubbing against the cornea and this may lead to scarring.  This condition should be confirmed by a biopsy of the conjunctiva.  I am not aware of any support groups but if you search the web you will likely find something.  You may want to find an ophthalmic plastic surgeon to help you along the way.
This information was provided for educational purposes only.
Please call 8003637575 to make an appt with a Henry Ford Ophthalmologist.
HFHS MD-JL