I Have Ocular Cicatricial Pemphigoid

A Ocular Cicatricial Pemphigoid anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Ocular Cicatricial Pemphigoid. You're not alone. 25 People

    Diagnosed At 23, Please Help!!

    I am a 23 year old female who was just diagnosed with OCP.  I showed symptoms for several years and my recent biopsy confirmed positive for this condition.  My eyes are in constant pain.  Daily, I suffer from stinging, itching and burning (predominantly in my right eye...
    Ceris Ceris
    22-25
    2 Responses Apr 20, 2012

    Just Confirmed

    I had problems with my eyes for well over a year. The right one was very red and both itched, stung, were sensitive to light. Also, my vision is often blurry and a sensation of something in them. I was at the University of Minnesota, had a biopsy and it was positive for OCP. I...
    Tam5115 Tam5115
    51-55, F
    5 Responses Mar 7, 2013

    Ocp Since 1999

    Hi, I am a 34 female who was diagnosed with Ocular Cicatricial Pemphigoid in 2003. I originally started with symptoms in 1999. Once I was diagnosed I was informed that I was the youngest in the uk to be diagnosed with OCP. I was also told that considering my age I had the worst...
    itsmeplayer itsmeplayer
    31-35
    2 Responses Jan 11, 2011

    My Mom Has Cicatrical Pemphigoid With Eye Involvement...

    She was diagnosed over a year ago and after trying steroids (caused psychosis at high doses, but did help), Dapsone ( caused anemia at high doses, but did help), methotrexate (hard to say if it helps at all) and Intravenous immunoglobulin (every other week for the last 7 months...
    fluffjackie fluffjackie
    41-45
    2 Responses Jan 1, 2011

    Is Biopsy Critical For Treatment Decision?

    Hi, My mom is suspected of having ocular cicatricial pemhygoid and at this stage we are tyring to decide on where the biopsy should be carried out and who should decide on the treatment. For those who have been through this path already, how important is the experience of...
    desiretolearn desiretolearn
    51-55, F
    7 Responses Nov 21, 2009

    Diagnosed JAN. 2013

    I was diagnosed in 2013 with OCP, I am having trouble finding a drug that will control the blisters in my mouth and throat. My disease was discovered after I had multifocal lens implants in Dec. 2012. Since then my eyes have been doing very well and vision is good but blisters...
    Becky2012 Becky2012
    66-70, F
    Oct 16, 2013

    Recently Confirmed

    On 1st July I went to see an eye specialist after suffering for around 2yrs with sore eyes, infections, light sensitivity & finally my bottom eyelids have started to turn inwards causing severe irritation from eyelashes (which I now Pluck out). The specialist confirmed OCP and is...
    dottymay dottymay
    66-70, F
    5 Responses Jul 5, 2013

    My Aunt Has Ocp

      My Aunt has OCP.  I created a time line of her life and chemical exposure, etc.  I believe her triggering event was many decades ago when her eyes and nose were exposed daily to harsh chemicals without adequate ventilation or PPE (personal protective equipment...
    NieceOfAuntWithOCP NieceOfAuntWithOCP
    36-40, F
    Jul 19, 2011

    How Did I Get Ocp ?

    I received chemical burns on my buttox and left leg about 8 years ago when I slipped on chemicals that were used to clean the floor. The chemical was alkaline based and did cause some severe blistering to the skin that took months to heal.Could this be the cause of my OCP
    hammondj hammondj
    56-60
    2 Responses Apr 1, 2009

    Help With Ocular Pemphigoid

    My son, 40 yrs old, has ocular pemphigiod and we are trying to find people who have this and have found something that helps with the daily pain. He also is looking for ways to stop the fllair ups that happen. Does anyone have a specialist they go to who really has helped them to...
    frankie4 frankie4
    61-65
    6 Responses Jun 15, 2009

    Diagnosed At 24 After Years Of Symptoms

    Hi everyone, I am a 24 year old female who was diagnosed with cicatricial pemphigoid/mucous membrane pemphigoid this past year. I had multiple biopsies and the symptoms for years before I was diagnosed. Now that I have started on treatment, I wanted to reach out to others who...
    Jo24 Jo24
    22-25
    3 Responses Oct 12, 2011

    I Have Ocp Too! - I Was Itsmepla<x>yer But I Can't Sign In So Re-joined As Itsmeagain1976

    Hi, I am a 34 female who was diagnosed with Ocular Cicatricial Pemphigoid in 2003. I originally started with symptoms in 1999. Once I was diagnosed I was informed that I was the youngest in the uk to be diagnosed with OCP. I was also told that considering my age I had the worst...
    itsmeagain1976 itsmeagain1976
    31-35
    Jul 21, 2011

    Fornix Reconstruction Due To Ocp

    My OCP got to the stage where my scarring prevented my eye from closing and with the threat of damage to the cornea the Doctors decided to operate. In April I had a fornix reconstruction to my right eye which involved removing all the scarring which stuck my eyelid to the eye...
    itsmeplayer itsmeplayer
    31-35
    Dec 11, 2012

    My husband has just been diagnosed with Ocular

    cicatricial pemphigoid. Hoping to connect with others who also have this rare disease
    jroush jroush
    56-60, F
    Sep 21, 2014
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