Projects: Patient Journal

Keeping a rare disease journal can help keep track of the many issues faced when first diagnosed and can be very beneficial for the clinicians treating you in the months and years to follow.

Pemphigus and pemphigoid are chronic diseases. Keeping track of flares, ever fluctuating medicines and their side effects, the psychological impact of living with a rare disease and any number of other aspects are easily forgotten over time, which is why logging the day-to-day management of your disease will go a long way in helping you make sense of this new aspect of your life.

Thanks to a grant from the British Association of Dermatologists PEM Friends has produced our own logo'd hardback journals available to our members for a donation which goes towards further print runs. Our members have already experienced the benefit of keeping a journal and have taken them to their medical appointments to make notes and keep track of what their clinician has advised.

We at PEM Friends urge all our members to keep a journal in some form. Some people prefer an app on their phone, but for many, having a physical journal brings a sense of order and management to their condition.