It’s October 2018 and Acromegaly Awareness Day was fast approaching.
What to do? In previous years I had made an e-Flyer outlining some of the key symptoms of Acromegaly. But this year I wanted to do something a bit bigger. I had three days in which to come up with something. Thank God I love a deadline.
I settled on a short video, something that was catchy yet informative – a bit like me. I found some interesting facts and key messages about the condition and – using Keynote (Mac’s version of PowerPoint) spent almost two solid days putting it together, just in time for the start of November.
And so on November 1st I unleashed ‘7 Things You Didn’t Know About Acromegaly and Never Even Thought to Ask’ to the public via Facebook and YouTube. At the very last minute I updated the video to ‘7 1/2 Things You Didn’t Know…’. The reason for this amendment? A feline vet expert informed me that cats can get Acromegaly too! She showed me some pictures and it was amazing to see the effects. There was no way I could leave this fascinating fact out.
It’s always a bit nervy when you publish something in the social domain, as you have no idea how it will be received. Thankfully, it was received with open arms and within a few hours it had received thousands of views and hundreds of shares. It was going viral. Well, viral enough for a video about a rare disease.
I myself shared the video to various Acromegaly support groups on Facebook, the largest being the Acromegaly Community one that supports Acromegalics around the world, but with a primary focus on the States. That day, Jill Sisco – President of Acromegaly Community – sent me a message.
“Your video is awesome! Who did you work with on it? It’s truly brilliant.”
I gave her a call that night and we spoke about the video campaign. She asked me which media company I had worked with to put it together. I explained that I had done it all myself in Keynote. She couldn’t quite believe it.
“So you know that we have the Acromegaly conference in New Orleans next year?”
“We’d love you to be there. Can you come?”
I thought about this for about 0.00004 of a second. Would I come to New Orleans and attend the biggest gathering of Acromegalics in the world? I said I would.
March 2019 could not come soon enough. After securing my flights and an Air BNB, it was now the waiting game. For those that remember my previous trip to the Vancouver Acromegaly Conference, you’ll be very aware of what I went through: namely, horrendous nosebleeds. And so in the approaching weeks I disciplined myself in all the things I had to do to minimise the risk: lots of water, wear the compression socks, get up and move about during the flight and – above all – don’t drink the free wine on the plane.
The flight itself was great and after 10 hours and 3 films later (Widows, The Favourite and – ironically – Andre (the biopic of Andre the Giant who had acromegaly), I touched down in New Orleans, or NOLA as I now felt obliged to call it.
As I made my way to the car park to meet my Uber driver, the first thing that struck me was the size of the cars. They were HUGE! I practically needed a step-ladder to get into mine.
“Where are you from?”, the driver asked.
And I explained why I was here, what the conference was about and what Acromegaly is. I love doing this – for this is advocacy in action. Who know what impact that morsel of information might have on friends or family of that driver. It could – one day – lead to a diagnosis.
I finally arrived at my destination after nearly thirteen hours of solid travel (+5 hours time difference!). I was wiped and after they gave me the guided tour and a bit of food, I crashed for the night.
A little bit of ‘me’ time
That night I slept like a baby and awoke pretty refreshed. I looked at my phone: 12.14pm. What?! I can’t have slept 12 hours! I quickly realised that my phone had decided to not change itself to US time, and it was actually 7.14am. And it stayed that way for the rest of the week. Not a great help for jet-lag.
Before exploring NOLA, I just wanted to rest, relax and get a bit creative. I was – after all – on holiday as well as attending a conference. So just before flying I gave myself the fun task of remixing a song for a competition in 48 hours. The deadline was Monday, and Monday was tomorrow. I had begun the remix on the train up to Heathrow and tinkered a bit during the flight. Now it was heads down and time to get it finished. I’m sure my hosts must have thought I was mad as I sat at their kitchen table, computer paraphernalia and headphones in hand. It was actually a really nice way to get to know them better as they did their day-to-day chores. I’d given them a copy of the book too and Megan was already two chapters in. We had plenty to talk about.
Remix done and submitted, I now felt ready to go and explore America. I always need to find my feet a little when I visit somewhere new, and NOLA was a truly new experience. I put a shout-out on the Facebook group to see if anyone had arrived early, and would they like to go exploring? A couple contacted me and said they’d been in town for a few days already, and I was more than welcome to join them. And so I did.
For the rest of the day we wondered around New Orleans. I was lucky they’d already explored the city, because they knew exactly where to go. And it wasn’t long before we found ourselves on the infamous Bourbon Street. It was like the last days of civilisation – and it was only 4pm. I loved it. Booze, food, good times and an air of debauchery that was heavy yet thrilling. There really is no place like it and – once we’d made our way through and popped out the other side – it felt like you’d been through some moral wringer and every last drop was squeezed out. I couldn’t wait to go back.
That night we went for dinner. As we were standing in the queue, we began to talk to an elderly couple in front of us.
“You’re from the UK!” the gentleman observed.
“I am certainly am.”
“Boy, what about Brexit? We thought our country was a mess!”
It was hard for me to disagree.
Over dinner, myself, Nicole and Chris (Nicole’s partner) discussed our acromegaly stories, from diagnosis to current situation. We also chatted UK cooking shows and the ways in which – culturally – USA and the UK differ. I tried the Shrimp Gumbo. My palette clearly differed too.
Meeting the Acro Family
It was time to leave my hosts and head towards the conference hotel. I’d had an amazing time and we marked the occasion by consuming 5kg of Craw Fish. Well, they did. I had a couple. I was slowly realising that this delicacy wasn’t for me.
As I entered the hotel lobby, it was time to play a game that I’m sure all members of our community play: Spot the Acromegalic. It wasn’t hard to see who was here for the conference. Acromegalics are – usually – defined by noticeable features such as a large jaw, extended facial features, risen forehead and large hands and feet. The smile can give it away too. And after checking my bags in, I approach a small group and was immediately covered in hugs. I had known some of these people for years via Facebook and now we were in an actual, real space together. It felt good.
That afternoon offered a chance to get to know even more people and it was a whirlwind of hugs and hellos. I got to see Bella and Deanna again who had been at the Vancouver Acromegaly Conference (and had rescued me after my horrendous nosebleed incident; epistaxis free at this point, by the way). There was an exciting buzz about the place as we all readied ourselves for the conference talks the next day.
That night a group of us ventured into town where I had some particularly delicious ribs. It was a real mix of people and I was soaking up the variety of American accents. I sat next to a guy called Jim and his wife Cheryl. It was not hard to see that Jim had Acromegaly. His hands were huge, his hips were not great and you could clearly see it in his face. We spoke about his diagnosis and his belief that it probably went undetected for 20-30 years. It was another example of how important easily diagnosis is to minimise the long-lasting effects of this condition.
Conference Time – Day 1
At 8am the next morning we all met in the main conference space for a day of talks and presentations. The agenda was broad yet relevant:
- My Role in Coping with Acromegaly
- Pain Management
- Surgical Procedures
- Research and Clinical Trials
- How to Communicate More Effectively
I’m not going to go over each of the talks because – heck – you can watch them in the playlist below.
I will highlight the Surgical Procedures video though. This was full of fascinating surgical videos that – whilst graphic – is always fascinating to see, and a good reminder of what we’ve been through. However, for those about to undergo the surgery, it might be an idea to advise them of what they’re about to see!
As ever, the subject of CSF leaks came up, so I took the opportunity to ask a question about a global approach to not allowing people go home whilst they still have the leak, and also to ask about vision loss too.
One thing that did strike me quite hard was how complicate the US medical system is. The concept of ‘insurance’ is an alien one to me, as we have the NHS: healthcare free at the point of use. What I was quickly learning was the incredible costs associated with the medications. We all recognise that pharmaceutical companies need to develop and fund drugs, but when a monthly injection costs over $10,000, that seems pretty insane to me. And what if you couldn’t afford the insurance? It makes me shudder just thinking about it.
Day 1 was over and it had been great. I had made lots of amazing new friends and touched base with some old ones. I love meeting people that you’ve gotten to know via social media, and hearing their voices for real was a joy. Oh and I’d sold nearly all of my books too. Carrying my luggage home was going to be far, far easier.
Conference – Day 2
Day 2 was shorter but no less important.
Running concurrently with the Acromegaly Conference was ENDO 2019 – a three day event for Endocrinologists from around the world. And so, that morning, everyone from the Acromegaly Conference made their way over to the event.
The space was huge. On stage, Jill sat with a team of professionals and was given the chance to tell her story. So why were we here? Well it was an opportunity for those attending ENDO 2019 to see the human side of an endocrine condition. At one point, someone from the other side of the conference hall asked if those with Acromegaly could stand and show their presence. As we stood to our feet, there was an audible gasp. How lucky were those Endocrinologists to be in a space with so many people living with this rare condition! As we received a round of applause, I was reminded of Dead Poet’s Society, when Robin Williams stands on the table. This was power in numbers, advocacy and awareness raising all rolled in to one.
After this session, it was time for a break and an opportunity to engage with a large collection of patient posters, including mine. I used the same poster I presented at the CRDN conference and it drew a lot of interest, with people wanting to find out more about my story. It was humbling and exciting and – as you can see from the picture below – I was pretty chuffed to be there.
Back at the hotel, it was time for the final presentations, Q&A and conference wrap-up. There was an interesting discussion taking place about patient groups and the idea of having a ‘family only’ Facebook group, a place where family members could share and discuss.
One member of the conference asked if it would be of benefit to share the findings from this group with those living with the condition, so we had a better understanding. In front of me a lady stood up and contributed her thoughts. There was a slight murmur as she spoke.
“Who is this?” I asked the lady next to me.
“It’s Karen,” she said. “Tanya Angus’ mum.”
My jaw dropped. For those who don’t know, Tanya Angus passed away in 2013 from gigantism with one of the most serous cases of acromegaly ever recorded.
As the conference closed, I stood up, leaned forward and tapped her on the shoulder.
“Hi. Are you Karen? Tanya’s mum?”
“I just wanted to say ‘Hi’. My name’s Dan and you may not know me, but last year I was awarded the Tanya Angus award for Advocacy in Canada.”
Her lip trembled and we hugged each other tight. This clearly meant a lot to both of us, and I was humbled by the fact that she was still attending conferences like this six years on.
Conference was over and it was time to get drunk. Did I say that? It was definitely time to let our hair down and so a few of us headed towards the New Orleans market to do some shopping. By 2pm, Bella found a hatch selling booze. They had Long Island Iced Teas for $5. How could I not?
An hour later and two iced teas down, we made our way to the Ghost Tour that had been booked that day. I can’t deny, I was pretty smashed by this point and my concentration span was less than adequate. I decided to record a snippet of the host in action. How I wish I hadn’t.
After the tour we were guided to a pub that stank so badly of fish we left as soon as we got there. Now more drunk than ever, we spent the next ninety minutes trying to find somewhere to eat, not an easy feat when you’ve got no idea where you are and it’s Saturday night on Bourbon Street. We eventually found somewhere that would take all of us and more hijinks ensued for the rest of the night. I had found myself a fabulous group of friends that I’ve stayed in touch with since. And I have no doubt I’ll be seeing them again in the future.
Time to Reflect
My time in New Orleans was over and I slowly made my way back to the UK. It had been an incredible week and I’m exceptionally grateful to Jill Sisco and the team for making it happen and for inviting me over.
Having run the UK Acromegaly Meetup myself, I know how much of a challenge it can be putting a conference together. The 3rd UK Acromegaly Meetup is coming up in July and attending this conference helped secure in my mind that I was doing the right thing. I think conferences/meetups need to be a blend of information, presentations, networking and – most crucial of all – patient stories. I would have loved to have heard some of these: acromegalics telling how it is, from diagnosis to treatment. Indeed just speaking to people at dinner or at the bar or drunk on a ghost tour became the greatest source of information for me; the real life aspects, the funny bits, the hardships.
One final thought. During the conference, someone remarked that Acromegaly was an awful condition that hugely decreases quality of life. They were clearly affected by their lot and couldn’t see much of a future. I had to respond. Yes, being diagnosed with a rare condition is hard and, yes, it can impact your health, but it’s important to remember that people can and do live happy, healthy lives. How you view your situation, how you approach every day – that’s half the battle. And as someone with two rare conditions, I perhaps know this more than most.
Life is tough. But life is for living. Especially when you’re in NOLA. Acromegaly does not – and will not – define us.