Sharing my story to help Busy Doctors

Dan JeffriesAcromegaly, wyburn-mason syndromeLeave a Comment

A few weeks ago I was browsing Facebook (as you do) when I saw a post on one of the Acromegaly community groups.

A company in London were looking for people with Acromegaly to take part in filming for online courses for junior doctors. The idea was that I would be examined and asked various questions, but without revealing what my condition was. During the online lesson, doctors would be asked certain questions and – hopefully – correctly diagnose my Acromegaly.

Lights, Camera, Action

So last week I made my way up to the recording studios in London, excited and intrigued by what lay ahead. I love being a part of the creative process and as my day job is the Head of Online Learning, this was of real interest to me. After arriving at the studios in Hackney, I had to wait a short while until it was my turn. I signed a few disclosure papers and spoke to the doctor who would be examining me. I asked if we would cover Wyburn-Mason syndrome. He said it could be mentioned but they would not expect junior doctors to diagnose that, let alone see it in practice; it’s just that rare.

Once I had met the small film crew and chatted with Nidhi Gupta, director and founder of Busy Doctors, we began filming. I sat on the couch and Ed, the Doctor, started to ask me ‘what was wrong’. We were doing this as though I hadn’t been diagnosed yet, which was a slightly odd approach but made perfect sense when considering designing an online course. (I should also stress that I had had really bad flu for a few days before, and so my brain was not on top form!).

“Hi Dan. I hear you’ve not been feeling well. Can you explain what your symptoms?”

And so I started to list off the symptoms I had experienced over ten years ago: sweaty hands, oily skin, change in hands and feet, change in facial appearance, problems with teeth, lower jaw moving forward, loss of libido, tired. The difficult thing with Acromegaly is that – whilst there are some common symptoms – everyone’s experience is unique. Not everyone experiences the change in facial features, for instance. I was asked if I had skin tags, a common symptom; I never did.

Once the examination was over and we had done some close-up shots of my hands and face, we prepared for a longer, more in-depth interview with Nidhi. As the crew were setting up, I asked them about Busy Doctors. Nidhi explained that she was also a film director.

“Not looking for a new project?”, I asked with a grin on my face, and proceeded to tell her about Me, Myself & Eye. I’m not expecting to see the Hollywood lights quite yet.

Knowledge is Power

During the interview, we spoke about previous medical history, the diagnosis of my Wyburn-Mason syndrome, the symptoms I had experienced during my 20s before my Acromegaly was discovered and the medication I’m currently on (and was on previously). The interview was well conducted and demonstrated to those doctors taking the course the right questions to ask, and relevant tests to take too, including a basic Field Test (done my moving a finger in to your peripheral field, something I ask readers to do in Chapter 3.

All in all it was a great experience and it always feels very rewarding to give something back, to know that this training may help a doctor to diagnose someone with Acromegaly, and hopefully earlier than the 7-10 years expected time for diagnosis. As I packed up, another patient entered the room. By the sound of his voice, I guessed he had Acromegaly too.

On my way home I posted on Facebook about my experiences, and the other Acromegaly patient replied, commenting that he spotted it was me. Maybe Hollywood is beckoning after all.

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