It goes without saying that you never wish it upon anyone that they have a challenging medical condition.
And when it’s rare, that challenge becomes even more acute. For those that have followed my story thus far, you’ll know I’m the lucky owner of two rare medical conditions. Here’s hoping I don’t score the hat-trick.
Bring rare, however, does offer unique opportunities. And one arose during January this year with Ono, a pharmaceutical company based in London, Japan and around the world. The Pituitary Foundation had contacted me and asked if would like to participate in a ‘collaborative co-creation workshop’. I wasn’t quite sure what this meant, but the theme of the day was for various people to discuss and explore what it meant to live with Acromegaly. I gladly accepted.
The night before I made my way up to London. I checked in to my room (which – apropos of nothing – had the most incredible staircase) and made my way to the bar, where we were all to meet for dinner. And it was here that I finally got to meet Sheila Khawaja. I’d known Sheila for some time through online activities, primarily connected with WAPO – the World Alliance of Pituitary Organisations. Sheila was a leading voice in Acromegaly advocacy, and it was great to finally meet her at last.
Dinner was a sumptuous affair. Already half-full on a delicious starter of prawns and chorizo, I was greeted with half a chicken and the biggest pretzel I had ever seen for my main. I gawped, an equal mix of hilarity and gluttony etched across my face. However, such a huge plate of food gave me time to talk at length with my fellow diners. Topics ranged from diagnosis, treatment, raising awareness and – inevitably – my own story. As you probably know, I love to tell my tale to those who’ve never heard it before, and I had an attentive audience. I sensed tomorrow was going to be a fascinating day.
Getting to know Acromegaly
Prior to the day, we had all been sent an email asking us to consider various themes and topics.
The first activity – after we had all briefly introduced each other – was to pair up and find out more about their partner: why were they here? What was their interest in Acromegaly?
I was paired with a lady called Lucy Campbell who was a GP. Her role was to provide a medical perspective to the day and it was great to see that this had been introduced. I told Lucy my story (she had been down the other end of the table the night before) and she frantically scribbled down notes. I then asked her what her background was. She told me that – whilst she was a GP – she was also a filmmaker. It was my turn to be gobsmacked. We spent the next few minutes discussing the creative process, her career so far and where she was going next and our general love of film. I love meeting people and being surprised by what they can do, and this was no exception.
Twenty minutes later and we were called back into the room. Sheila and I had offered to deliver short presentations to tell our story: from diagnosis to treatment to the advocacy work that we do. As well as myself and Sheila there were three other Acromegalics in the room: Bridget (from Germany), Nan (from the Netherlands) and Richard (from the UK). I had ‘met’ Richard before in the virtual world and was aware that he too was a staunch advocate of Acromegaly. We shook hands and mine felt tiny in comparison. It’s amazing what this condition can do.
There were two things I was really impressed with during this session. One was that the organisers did not feel the need to rush this. Yes, we were probably running over time, but Swii:ch kept things moving, never once looking at the clock or moving things on. This was refreshing to see; patient stories and insights are truly invaluable, and it was clear to see that Ono were drinking this in.
The other was that we got to hear from a wide range of stakeholders. Swii:ch, the organisers, had clearly thought hard about who to invite to get the most insight. There was a member of NIHR, the National Institute for Health Research present, the Chair of the Board of Trustees from Pain UK and an experienced Endocrine Nurse, now the Endocrine Nurse for the Pituitary Foundation, as well as members of the Ono Team. Each had their own story to tell too.
But perhaps the most revealing story of all of was Jay’s, who was there as the partner of someone living with Acromegaly. His insight from the other side of the fence was fascinating: from the fear of diagnosis to the hopeless desire to want to help, to suddenly finding himself an expert in pituitary conditions. It was moving, honest and – above all – real and I think we all felt slightly honoured to have been there.
After lunch, we moved on to other areas for discussion. We reviewed and examined current resources available online – how websites looked and presented their information. Were they easy to navigate? Was the information relevant? Did they work on a mobile phone? This was clearly useful feedback for Ono who were keen to develop their own website and supporting information.
We were also asked to identify other online resource that were useful to patients. I commented on the huge impact that social media had played with rare conditions. Here was a place that people could ask questions, express their anger, feel supported and talk about all the trials and tribulations that family and friends may not understand. Was there scope for pharmaceuticals or other organisations to replicate this social network? It made for an interesting discussion.
And so the day started to draw to a close. It had been a long day – mercifully fuelled by cakes and biscuits – but it had been an enlightening day. There’s something very special about spending time with people who have the same rare condition as you and – whilst there were similarities – there were clear differences too. Sometimes this was in the way Acromegaly presented itself (look at the picture above – would you know that Brigette and Nan have Acromeglay from the ‘traditional’ associated features?) but it was also interesting to hear how different countries dealt with the complicated process after diagnosis. At times it felt like the UK was doing a pretty good job in comparison to our European neighbours.
A huge thanks to Swii:ch and Ono for their hospitality and willingness to learn. Here’s hoping that this paves the way for Ono to develop effective medication and treatments for Acromegaly and other rare conditions.