Richard’s RARE Ramblings: accommodating for rare conditions
Richard Barlow is a dermatology registrar who lives with xeroderma pigmentosa (XP), a rare skin condition, in which the body cannot repair skin damage caused by ultraviolet radiation. In the latest of his regular columns, Richard explains how his colleagues’ thoughtful accommodation of his condition made for an unforgettable evening
DMX vs. UV!
The past few weeks have been particularly busy with three conferences in short succession—providing an excellent opportunity to learn from world experts, share experiences and, of course, meet new people. One of the many perks of being a dermatology registrar (and eventual consultant) is the sociability of the specialty. I don’t think any other discipline in medicine or surgery can compare.
One of these was the British Association of Dermatologists (BAD) annual meeting, held this year in Liverpool, face-to-face. The venue was a vast conference centre located in the docks of the city.
As I pulled into the adjoining car park on the morning of day 1, I could see the centre was in keeping with the modern architectural trend of using a greenhouse as a blueprint. Undaunted, I plugged in my wireless earphones, donned my visor and gloves and started my “Yo, Julie!” playlist. DMX started roaring into my ears, his iconic intermittent barking preparing me to storm the conference citadel and upload my slides for the afternoon talk I was giving.
The main reception area, which most of the rooms connected with, had a high expansive glass ceiling, permitting UV to stream in from all directions. I found this somewhat bizarre, considering that the meeting had so much content around the dangers of skin cancer and how we should protect ourselves and encourage patients to do the same.
Despite X’s intermittent expletives and poetic rhymes, I could still see all the excitement my photoprotection generated from other delegates, many of whom were dermatologists that I suppose were just having a perfectly natural good old stare.
One of the social events at the conference is the annual dinner for the British Society of Dermatological Surgery (BSDS), quite a fancy shindig with speeches and a three-course dinner. You know the sort. Multiple knives and forks flank the plate in neat rows, each one designed for a different element of the starter salad (although I must admit, I just used one for all three courses, including the accompanying soup).
The dress code was black tie, so I took the opportunity to sport my blue tweed jacket with waistcoat and (photoprotective) cravat, a fine red silk paisley one to contrast the darker blue of the wool. Debonair is probably the word you’re most likely racking your brains for I should think. Berty Wooster would have been proud!
Dining in the dark
I arrived at the much-acclaimed Royal Liver Building at 7.15 pm on this June evening. UV was out and about to ruin my night, but I conceded its role in sustaining life on the planet and put my best booted and polished foot forward—only to find the front door locked. Feeling like a clueless wally, I realised the entrance was actually at the rear of the building. I wondered if the employees of Gotham City Police department had made the same error a few years back during the filming for Batman.
I eventually made my way in with some colleagues and friends who were equally baffled. How many doctors does it take to successfully enter a dinner venue? On this occasion the answer was five: four of whom were consultants.
We stepped out of the lift onto level “high up” and I caught up with several friendly faces, familiar and new alike. The room with the drinks was quite bright to say the least—I therefore had to loiter around the bar in the darkened corner.
Dinner was called and we proceeded to the dining hall. I was flabbergasted. We went from a despicably bright room with pervasive bright sunlight to a romantically lit dining room with not a sliver of natural daylight penetrating the three-storey hall. The blinds were completely drawn, ceiling to floor, on all sides. One large viewing area of sorts even had a stack of tables and chairs in front of the blinds to provide further protection from the ultraviolet rays.
Upon seating, I realised each table had lots of candles distributed equally across them, which gave the room a rather ethereal glow, creating the illusion that each 10-person table was one on its own. I felt myself immediately relax: shoulders depressed, head upright, chest out and bottom tucked in. Whilst this may have appeared as pedantic adherence to immaculate posture, it was actually a complete relaxation of my body. I knew I was safe and able to enjoy the night without any concern.
Overall, it was a fabulous night, completed by a tremendous nightcap. I owed the dining experience to wonderful friends and colleagues who had done a lot of legwork to ensure I would be able to attend without any worry: Blake Denkinson, Kristina Putzova, and I am sure, numerous others.
I almost forgot my overriding point…
The fact is, I had been made to feel a real part of the evening. The people who arranged it may never know the enormity of their gesture; I will remember it forever.
Living with a chronic condition that demands such extreme lifestyle changes will inevitably draw a broad spectrum of reactions. In the end, we can only control how we choose to react. Of course, this is very high and mighty of me to say given my very fortunate position. This experience represents only a smidgeon of the challenge others with my condition endure, who have more severe consequences, whether they be cutaneous, psychological or neurological.
The point I am making is that despite XP’s complexities, a great deal can be done to help, even if somebody has very little knowledge of the condition itself. Indeed, I doubt that my dermatology colleagues on this occasion had encountered much XP previously. Nonetheless, they understood enough to know what was required for me to get stuck in without any worry.
Anyone with XP, or any other condition that requires adjustments to be made for them to ensure their health and safety, should in no way feel embarrassed or apologetic in objectively stating what is required for their participation. I have fallen foul of this in the past and have missed out on plenty. Don’t wait! As the American poet Robert Frost said: “Freedom lies in being bold.”
Richard Barlow is a person with xeroderma pigmentosum and the chairman for Action for XP, a charity which works to support people with XP in the UK and abroad. Incidentally, he is also a dermatology doctor training to be a consultant.
Please contact Richard if you have any thoughts on this piece or suggestions on what you would like to read about: Richard@action4xp.org
Whilst the tone of Richard’s pieces may often be light-hearted, do bear in mind that XP is a serious condition and can be life-threatening. There is no cure, only supportive management, and each person is entitled to manage their own condition in the way they deem best for them.