Patient information on Ocular Cicatricial Pemphigoid (OCP) is scarce. I’ve used the name OCP as this is the easily recognizable name for the eye disease, but the most up to date name is Ocular Mucous Membrane Pemphigoid. It is a rare condition and a lifelong disease. Few ophthalmologists are expert in diagnosing the condition, which is often overlooked for many months, even years, during which time irreversible sight-threatening damage has often unfortunately occurred. Few ophthalmologists are trained managing the condition using systemic immunosuppressive medication.
As one of the UK experts in Ocular Cicatricial Pemphigoid, I’ve put information on my website about this eye disease, which I hope patients who have been told that they may have Ocular Cicatricial Pemphigoid, or patients who have been diagnosed with Ocular Cicatricial Pemphigoid will find helpful.
Patient organisations like PEM Friends UK , and the International Pemphigus and Pemphigoid Foundation, play a crucial role to connect people who have been diagnosed with these rare diseases. Pemphigus and bullous pemphigoid fortunately rarely affect the eyes, unlike OCP. However when they do affect the eyes, there can be similar features to OCP (conjunctival inflammation and scarring). It can be isolating and scary to feel alone while living with one of these diseases, so it’s important to put patients in touch. Keep up the great work, PEM Friends UK and IPPF!