In September 2025, around 30 UK patients (and their families) met in London for a UK Patient Engagement Day. I set up the first UK Acromegaly Meetup in 2017 and we did them again in 2018 and 2019. Then COVID hit and we hadn't done one since. Thanks to The Pituitary Foundation and Camurus, we had the resources and support to develop a patient engagment day. And what a day it was. As always, the focus is on those living with acromegaly to have a chance to meet each other, share experience...

In Episode 24 of AcroTales we meet Cas from Nevada in the USA. Cas's story really demonstrates the challenges faced when undergoing the 'diagnostic odyssey' in a search for answers. After experiencing a range of symptoms, Cas was finally diagnosed in 2019 - just before the COVID pandemic swept the globe. Yet Cas's resilience, positivity and humble nature means she has not let this condition define her.

In Episode 23 of AcroTales we meet Jeremie from the Philippines. Jeremie's story is one of challenges, resilience and hope. Diagnosed with a tumour at just 19 years old - and right in the middle of Covid - he explains his journey to diagnosis, the treatments he received and how - through strength and adversity - he is taking ownership of his condition and is now a leading advocate for Acromegaly in the Philippines.

In this episode of AcroTales we hear from Chrissy who lives in the Cotswolds in the UK. Chrissy is 44 and was diagnosed in 2013. Everyone's AcroTales is unique and comes with surprises, but there's no doubt that Chrissy's tale is one of the most jaw-dropping stories out there. Listen to the incredible way she received her diagnosis and how she has embraced life since treatment.

In Episode 21 of AcroTales we meet Natalie who is based in Buckinghamshire in the UK. Natalie's story is rather different in that she has elevate IGF-1, a micro adenoma yet her Oral Glucose Tolerance Test (OGTT) is in range - and therefore has not yet received an official diagnosis. So what's it like living with the symptoms of a condition yet not knowing whether you actually have that condition or not? Natalie outlines this unique situation whilst considering what the present - and fu...

In Episode 20 of AcroTales we speak to Thomas from Switzerland. Thomas was diagnosed only a few months go and recently had surgery, so this is clearly very new and raw for him. He talks about the symptoms, diagnosis, his girlfriends desire to know everything about Acromegaly and how his approach was not quite the same.

In Episode 19 of AcroTales we speak to Roz from Essex in the UK. Roz was diagnosed in 2005 after a succession of symptoms that had been present since her teens. Roz's journey has not been easy and had her third round of surgery only six weeks ago! (March 2024). However, Roz faces her Acro-challenge with a great sense of humour and is now a Volunteer Ambassador for The Pituitary Foundation, proving that every cloud has a silver lining. We also discuss how vital it is to have a co...

In Episode 18 of AcroTales we speak to Jill from from Oklahoma in the USA. Jill was diagnosed with Acromegaly in 2005 and it was quite a struggle for her to get a diagnosis. Jill is shining example of turning a negative into a positive. For over ten years she has been at the helm of the Acromegaly Community and leading a mission to support people with Acromegaly, whatever the stage of their journey. We chat about her complex diagnosis, the role of being an advocate and the changes she's seen ...

In Episode 17 of AcroTales we speak to Vanessa from Rhode Island in the USA. Vanessa was diagnosed with Acromegaly at the very young age of 21 and totally by accident too after a visit to see an allergy specialist! Vanessa's story explores the various conditions that she has, how these may have contributed and how Acromegaly hasn't stopped her living her life and - indeed - empowered her to help others who are facing the same struggles.

In Episode 16 of AcroTales we speak to Paul from Melbourne in Australia. With a hefty dose of humour, Paul talks about the road to diagnosis, the challenges faced and how his first diagnosis wasn't the only hurdle. Thanks to the support of his family and the ability to laugh at himself (this episode does contain a bit of adult humour!), Paul's message is one of hope and adversity.

In Episode 15 of AcroTales we speak to Caroline from Bedford in the UK. Caroline was diagnosed with Acromegaly at the extremely young age of 13 and her fascinating tale explores diagnosis, the impact on family and her formative years, how it's helped shape her life and the amazing opportunities she now has to raise awareness.

In Episode 14 of AcroTales we speak to Phil from Southampton in the UK. Phil was diagnosed on April 1st 2010 (no joke!) and tells the story of his long road to diagnosis, the impact it has had on his life but also how it has motivated him to help others who have recently been diagnosed with Acromegaly.

In Episode 13 of AcroTales, we speak to Spencer in the UK. Spencer was diagnosed by a chance encounter, and talks about his experiences of diagnosis and how the condition impacted on his life.

In Episode 12 of AcroTales we speak to Natalia from Columbia. Natalia was only diagnosed in 2019 and so she paints a vivid yet insightful picture of her diagnosis, the impact it has had on her life plus how - just one year on - she is already supporting others diagnosed with Acromegaly.

In Episode 11 of AcroTales we speak to Dee from Maryland, USA. With her background in nursing, Dee paints an honest yet insightful outlook on her Acromegaly, the journey she underwent to get there and the shocking discovery she made all by herself, all told with a great sense of humour.

In this episode of AcroTales, we hear from Richard in the UK. Richard was diagnosed in his mid-60s and talks about the diagnostic journey he underwent to reach his diagnosis and the impact it's had on his life, all told with great humour.

In Episode 9 of AcroTales we speak to Larry from Nebraska. Larry paints an insightful picture of the difficulties faced when you're diagnosed with Acromegaly and - whilst life was tough - he was able to use his positivity and spirituality to get him through.

In Episode 8 of AcroTales we speak to Bert from Nebraska. Bert was diagnosed with Acromegaly in 2010 after a range of health complications led various specialists couldn't initially make the correct diagnosis. We discuss this impact this had on Bert's life, how further complications meant a return to hospital and how he now faces up to this unique condition - by giving something back.

In this episode of AcroTales we talk to Mike from London in the UK. Mike was diagnosed only a couple of years ago but has been on quite a journey since his diagnosis, and talks in depth about treatment, medication and radiotherapy. As well as this, Mike also discusses how he used various coping mechanisms throughout and the help provided by The Pituitary Foundation.

In Episode 6 of AcroTales we talk to Sheila from Trieste in Italy. Sheila is 51 and was diagnosed with Acromegaly in 2003 and is currently in remission. We discuss the complications leading up to diagnosis, how it impacted on her life and the excellent work she now does with WAPO - the World Alliance of Pituitary Organisations.