Dan Jeffries: An insightful and hilarious patient memoir

Being Rare

From Dan Jeffries, writer, author  – “It might sound a little perverse, but I feel almost lucky to have experienced two rare medical conditions in my life.

The first was Wyburn-Mason syndrome, a condition that effects the vascular system and can lead to all sorts of complications. I was unfortunate enough to discover that – at aged four – it had left my blind in my one eye and short-sighted in the other. And that’s totally blind. No light, no shadows; nothing.

Being rare meant that I had frequent visits to Bristol Eye Hospital. I was originally told that my condition affected one in three million people. I later found out that there have only been around thirty reported cases in the last fifty years — worldwide. That’s pretty damn rare.

And then – when I was thirty – I discovered I had another rare condition: Acromegaly. Throughout my twenties I knew that something wasn’t right. I felt lethargic, had no confidence, didn’t want to be creative and was a total flop in bed. And I didn’t know why. I guessed this was just ‘middle age’ creeping up on me. But before I was thirty? That just didn’t feel right.

The discovery of my Acromegaly was completely by chance. Bristol Eye Hospital had asked me to be a test patient for some students doing their exams, to see if they could diagnose my Wyburn-Mason syndrome. But because they were on such high alert and looking for any symptom that might be apparent, they all started observing that I had a “protruding jaw, very large hands, an exposed forehead”. I sat there smirking to myself, thinking they had gotten it all wrong. But once four and then five of the students had made the same observations, I got a little concerned.

I asked the consultant what it all meant.

“You should go and see a Doctor. You might have Acromegaly.”

I ran out of the hospital, typed ‘Acromegaly’ into Google and read the symptoms. My jaw dropped. This was it. I knew this was it! It clarified why I had been feeling so terrible and suddenly I felt elated; at last there was an explanation.

That was back in 2007 and since then life has continued to be a pretty exciting rollercoaster. Yes the tumour has gone, but the repercussions of that 7mm lump of goo are still evident today. My teeth are in a terrible shape, and my heart has a leaking valve. But on the whole I feel like a new man, so much so that I wrote a book about the whole experience. Thankfully the feedback has been amazing, particularly from those who have experienced Acromegaly. And that has to be better than any five-star review.”

Note: Dan Jeffries’ insightful and hilarious memoir explores what it’s like living with one of the world’s rarest medical conditions — and then finding out you have another one.  To read more about Dan’s story or order his memoir  visit his website or connect to his facebook page

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