For anyone living with Acromegaly, it can often be a strange, bewildering and daunting experience.
And if you’re recently diagnosed, even more so. You’re flooded with a tonne of information and thrust in to a world that you never expected to be a part of. Yes, finding out why you’ve been feeling so terrible can be a huge relief, but the words ‘brain’ and ‘tumour’ are scary.
Because of this, I thought it would be nice to get people together with Acromegaly — to share experiences, hear from experts and just know that there are others out there going through the same thing. Last year we launched the 1st UK Acromegaly Meetup and it was a great success. It seemed only natural to do another one.
Knowledge is Power
First off, I have to say a massive thank you to the Endocrinology team at QEH Birmingham. They played a huge role in getting the event set up, and it was back in early 2018 that we started discussing a potential agenda for the day. I visited the hospital to talk with the team and we settled on the following topics:
- The History of Acromegaly
- The Psychology of Acromegaly
- Medication options and update
- Getting Support: Benefits, Travel and Insurance
- Patient Stories
- Men v Women: Who Fares Best?
Whilst the team set about preparing their material and presentations over the next few months, I started making the arrangements to host another meetup.
People are Power
As with the first meetup, I announced the date on Facebook and was met with a swathe of interest.
I think people are genuinely excited to know that they can meet other people with the same condition as them, a condition with a prevalence of only 40 per million. A few weeks later I released the tickets and by the end of June we had nearly 60 people register. This was made up of nearly 40 patients with Acromegaly and the rest family or partners. Having family and partners present is vital; they are part of the journey too. In fact there were a few occasions where it was the partner booking the tickets and encouraging their better half to attend. That’s love for you.
Whilst I may carry the air of a man living on the edge, when it comes to things like this I like to play it safe, and so I arrived the day before. I wanted to make sure I was fresh on Saturday morning and that trains, the heat or any other excuse would not get in my way. On the Friday night I met Phil and Tracey, who I had the pleasure of meeting the year before and who have been brilliantly supportive on social media. It was good to catch up and share stories. Phil was looking well. That made me happy.
And so on Saturday morning, I made my way to QEH Birmingham, armed to the teeth with a bag of technology and literature.
But there was a problem: we couldn’t get in! Security would not give us clearance to enter the lecture hall until certain members of staff had turned up. Before I knew it, it was 10am and still we weren’t in! Panic? Moi? Of course not, but I can’t deny I was getting a little twitchy. However it was a nice opportunity to meet those who had arrived early for the meetup, and I directed them upstairs to get a tea or coffee whilst we waited. And then Dr Ahmad showed up, used his key card and we were in. I spent the next 20 minutes testing out different positions for the mic and mobile phone, to try and get the optimal recording whilst ensuring the slides would be in the background. It wasn’t going to be easy.
“Welcome to the 2nd UK Acromegaly Meetup”
I soon realised that technology was going to be an arse. As people slowly started to drift in, I loaded up Facebook Live and pressed record. And once people were settled, I welcomed them to the day and outlined the agenda for the next few hours. I also took the opportunity to review the past twelve months: how social media was bringing people together more and more, particularly when it came to sharing information and experiences about rare diseases. I observed that the media – particularly the press – seemed to be more aware of Acromegaly and raised the profile of the condition, which could only be a good thing (even if it mean having stories next to dozens of articles about Love Island). And I reflected too on my own adventures during the past twelve months: my trip to Vancouver, talking at various events, TV appearances and my recently awarded Global Genes nomination for RARE Champion of Hope. It had been a good year.
The History of Acromegaly
Psychology of Acromegaly
Benefits, Travel and Insurance
Men v Women and Closing Remarks