At the start of February 2017, I received an email from the Head of Patient and Family Services at the Pituitary Foundation, based in Bristol.
I’ve been speaking to xxxxx at Pfizer, who are looking for an acromegaly patient to talk about their journey at an informal Rare Disease lunch on 28 February.
I suggested that you would be really good to do this. The lunch will have 30 -40 internal Pfizer people including clinical staff and you are free to do a PowerPoint or just stand and talk.
Pfizer? Wow. I’d heard of them. What an honour!
I knew that Rare Disease Day was coming up, and this was a fantastic opportunity to talk not only about Wyburn-Mason syndrome but also my Acromegaly: two for the price of one, if you will.
Having done a presentation at Bristol Central Library towards the end of 2016, I already had a structure in place but I knew it needed some editing, so I set about removing some of the slides (mostly those talking about the writing and publishing process) but also adding a couple to reflect on the importance of Rare Disease Day and what it’s like living with such conditions. I still had 130+ slides to get through in around 30 minutes. I like a challenge.
So on Tuesday 28th February I made my way to Surrey and Pfizer headquarters. It’s a truly impressive space, set in beautiful grounds and as I made the long walk to reception, the first wave of nerves shimmered through my body. I was taken to the room where I would be making my presentation, to see balloons and cakes – celebrating Rare Disease Day. I secretly hoped the balloons were for me.
With some time to spare, I setup my presentation, made sure it was all working OK on the huge TV and speakers (I had included some videos too, so sound was important), arranged a pile of books at the front and then waited for my audience to arrive at 3pm. I paced nervously. I’m usually fine when talking to a room, but this felt different, like I was stepping up a level. And as 3pm arrived, people started streaming in. Lots of people.
Mike Metcalfe, the Rare Disease UK Medical Director, stood up and the room fell silent. We had already spoken earlier that day and decided upon how he would introduce me. As he started talking about Rare Disease Day and introducing me to the room, I looked to my left and noticed that the TV had gone blank. Panic! I shimmied across to the laptop which was in the middle of the room to check that it hadn’t gone to sleep.
“Everything OK? You’re not leaving us already, are you?”
“My presentation has vanished!”
I wiggled every cable and socket but nothing was happening. Someone dashed out to find the Tech Support guy who had helped me setup earlier, and he wiggled a few more cables. And suddenly the screen flashed back into life. And then it was gone again. And then back again! The audience were loving this; you couldn’t say the same about me.
Once the screen was confirmed as stable, Mike was able to give his introduction again and the presentation was underway. I took a deep breath and managed to bring my nerves under control; I had been fine up until the point but technology, usually my ally, had this time decided to work against me.
Forty-five minutes later and it was all over. It had gone down a storm. People laughed in the right places, listened intently as I read from the book, empathised when I spoke about my conditions and treatments and asked really valuable questions about living with a rare disease and how they, as a company, can get more information and feedback from patients who may be using their drugs. I also talked about the impact of Social Media and how networks such as the UK Acromegaly Group on Facebook really helped people recently diagnosed with Acromegaly. It was brilliant.
As I ended my presentation, I pointed to the pile of books and mentioned that these were for sale and not just for display and, if anyone would like one, to come and chat after. I am pleased to report that the Rare Disease division of Pfizer now own twelve copies of Me, Myself & Eye — they bought a whole box! And not only that, we discussed the possibilities of presenting this in other Pfizer establishments around Europe and the US. Exciting times.
So a huge thank you to the Pituitary Foundation who put me forward in the first place and to the audience at Pfizer for being so generous, interested and attentive. Being rare has never felt so good.