Ocular mucous membrane pemphigoid

What is it?

Ocular mucous membrane pemphigoid is a type of scarring conjunctivitis. It affects the membrane that lines the eyelids and covers the white of the eye (the conjunctiva).

In the UK, around 1 in a million people have ocular mucous membrane pemphigoid. If it’s not treated, it can lead to blindness.

  • Causes

    We don’t know exactly what causes ‘ocular pemphigoid’. It’s an auto-immune condition, which means that the body’s defence against infection (the immune system) has turned on its own body.

    Most people with the condition are between the ages of 60-80, but it can start in early childhood on rare occasions.

  • Symptoms

    Pemphigoid is the name for a group of rare conditions that cause blisters and scarring on the skin. The ocular (eye) mucous membrane form is often part of a wider condition that affects other membranes that line the body, such as in the mouth, nose, throat and genitals.

  • Treatments

    Current treatment for ocular mucous membrane pemphigoid usually aims to reduce inflammation, with steroids and other anti-inflammatory drugs.

    Surgery can’t cure the condition but can sometime help to ease symptoms. For example, surgery can ease the position of a scarred eyelid that is pulling the eyelashes inwards and corneal transplant can restore sight lost to scarring.

  • Research

    A key area for ocular pemphigoid research is to find a treatment that can prevent scarring. Suppressing the immune system works well to combat inflammation, but does not tackle sight-threatening scarring, which can continue after inflammation has gone.

    Read our research projects
  • Clinical trials

    You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.

    What are clinical trials

    Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.

    Taking part

    Here are some ways to find out about research projects and clinical trials that you can get involved in.

    UK Clinical Trials Gateway

    The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.

    NIHR Clinical Research Network Portfolio

    The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.

    If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.

Last updated August 2016
Approved by Professor Julie Daniels, UCL Institute of Ophthalmology

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