On World Humanitarian Day DEBRA would like to celebrate the impressive work our EB specialists do to support medical education and training in EB and Dermatology globally. Here Professor Adrian Heagerty, Consultant Dermatologist at Solihull Hospital (part of University Hospitals Birmingham NHS Foundation Trust) and Honorary Professor of Dermatology, The University of Birmingham, recounts a recent trip to the Middle East to teach medical staff about specialist care for EB.  

An opportunity to talk about epidermolysis bullosa (EB) must not be missed. Last September I was invited to speak at what turned out to be 16 venues over 6 days in Saudi Arabia, starting in Jeddah, moving on to Dammam and then to Riyadh. This whirlwind tour started inauspiciously by my arrival in Saudi without luggage. Thank goodness for memory sticks and Marks and Spencer. Kitting myself out again alongside a visit to Debenhams set me up for the first venue, a military Hospital just outside Jeddah. EB, particularly the severe types is remarkably common in the Middle East because of the acceptability of consanguineous marriages.

A local geneticist pointed out that EB was often only the tip of the iceberg with many other severe inherited diseases also occurring in the families. Surprisingly, the one EB type especially exacerbated by heat, EB simplex, was hardly ever seen. Several of the meetings included affected patients. A small girl with dystrophic EB who had undergone a bone marrow transplantation for her EB in the US asked me to pose with her for a photo, when she found I knew her transplant team.

Teaching in the Middle East

With no sign of bags we moved on, with several more venues and then a flight to Dammam for an evening talk, again with patients and medical staff, before catching the last flight to Riyadh. After 3 hours sleep off we went again, visiting Military Hospitals, Tertiary referral Hospitals, and public hospitals. The interest in diagnosing EB was extraordinary, made all the more necessary by the lack of any local patient support group or DEBRA. The ability to care for patients was largely deferred to local dermatologists although two hospitals had effectively a series of district nurses, several of whom were European, who went out into the community. Unsurprisingly dressings were many and varied, and so teaching about these was of paramount importance.

A cultural shift

The people I encountered were open and eager to learn. The junior doctors adopted me in various places, feeding me with dates and tea, and their local coffee. Food was either delicious Lebanese or European, save for an evening leaning on camel saddles on the floor and eating chicken and, I am afraid to say camel.

To see Saudi now with the great changes happening bodes well I believe for EB care. Instead of sending patients to the US or Germany they are trying to manage at home. Hopefully families can set up a patient support group or DEBRA to help this. Would I go back – most certainly.

As for the luggage – it arrived home on the day after me. At least my hosts helped out.