The first dedicated UK Acromegaly Meetup has been hailed as a great success.
The inaugural meeting was held in Birmingham in June and attracted 45 patients from across the UK as well as a wide digital audience thanks to live streaming.
Watch presentations from the event
The event was a chance for sufferers of the rare disease to create a platform for discussion and support for the estimated 5,500 acromegaly patients in the UK.
Dan Jeffries, an Acromegaly patient and Volunteer Ambassador for The Pituitary Foundation, organised the event which featured talks from key endocrine staff from Queen Elizabeth Hospital, Birmingham.
Jeffries said: “I think the UK Acromegaly Meetup was important as it gave those with the condition the chance to meet other people from the UK and by doing so realise that they are not alone.”
“We were able to provide a wealth of information that was both personal and medical.”
He added: “The day gave those who were awaiting surgery the chance to meet and hear from others who had overcome the condition, so they knew there was a light at the end of the tunnel.”
The event used a mix of digital technology to reach a wider audience, streaming live on Facebook and hosting interactive group quizzes via mobiles phones.
Working groups gave the attendees a chance to enjoy more in-depth conversations and reflect on the group’s similarities and uniqueness.
One of the attendees, Lauren, is an Acromegaly patient of 2 years. She said the day was an important landmark.
“The meet up bought home to me that I am not fighting this alone, like I had felt since being diagnosed two years ago.
“Although my family and friends are wonderful it’s totally different to chat with somebody who really does understand,” she said.
“There is definitely an Acromegaly community out there, I have had to put myself out there to find it.”
Medical professionals in attendance were all from the Queen Elizabeth Hospital, Birmingham and included: Dr Niki Karavitaki, Senior Clinical Lecturer in Endocrinology, Dr John Ayuk, Consultant in Diabetes & Endocrinology, Mr Shaz Ahmed, Consultant ENT & Skull Based Surgeon, and Mr Sherwin Criseno, Endocrine Specialist Nurse.
The following videos were recorded on the day:
- What to expect when you have pituitary surgery
- “What if I’m not cured?”
- Living with Acromegaly – Rachel & Carolyn
- Living with Acromegaly – Steve & Lauren
