AcroTales

In Episode 27 of AcroTales, we meet Paula — born and bred in Durham, UK, now calling Toronto, Canada home.Paula's story is one of remarkable coincidences and profound life challenges, met with an inspiring stoicism and quiet positivity. A seasoned Ironman competitor, she has also faced her greatest challenge yet: sharing her journey with the world through her memoir, The Brain Tumour That Saved Me.In this engaging episode, we explore Paula's road to diagnosis, the management and treatment of her acromegaly, and the perspective that living with a rare condition has given her.

In this episode of AcroTales, we meet Matt from New York in the USA.Diagnosed with Acromegaly in 2022, Matt takes us beyond the physical symptoms and into territory many patients face but few openly discuss: the devastating impact on mental health and the relentless weight of anxiety.Matt strips away the usual cautious language and speaks with raw honesty about struggles that too often remain hidden in the shadows of chronic illness. It's a powerful reminder that healing isn't just physical.

In Episode 25 of AcroTales we meet Sam, who is from Lincolnshire in the UK. Sam's story is one that shows how quickly pituitary conditions can develop and the sharp impact they have on our health. Within two years Sam has discovered a range of pituitary issues, not helped by the battle he has had to face with the healthcare system to get the tests and support he needs. Combine that with a job where literally millions of pounds are at stake should 'brain fog' kick in, and you have a truly fascinating AcroTale.

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 experiences and learn. We had medical specialists too, who offered great insight into current developments in diagnosis. During the day I grabbed my microphone and grabbed (not literally) a few attendees for their stories and their thoughts on the day. 

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 future - holds.

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 competent Endocrinologist and touch upon the current state of the NHS.

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 over the years. 

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. 

In Episode 5 of AcroTales we talk to Jennie from Wellington in New Zealand. Her open and honest account of being diagnosed with acromegaly explores the treatment, surgery, complications faced and how it's affected her life - but not her humour.

In this episode of AcroTales we talk to Rachel from Oxfordshire in the UK. At the time of recording, Rachel had undergone surgery to remove her pituitary adenoma less than two weeks before, so this is a amazing opportunity to hear from someone who is fresh out of the operating room. Rachel has also made some videos about her journey with Acromegaly, which can be found here on YouTube. 

In this episode of AcroTales we talk to Trinity from Phoenix, Arizona about the challenges of growing up with a pituitary condition at such a young age. We also discuss the important role that nurses have to play in the management and treatment of Acromegaly and how friends and family are such an important factor when coping with the condition.

In this episode of AcroTales, JD Faccinetti talks about his the long road to diagnosis, living with Acromegaly and what motivated him to begin Pituitary World News, a leading website that focuses on medical news and patient information related to the pituitary gland.

In the first AcroTale, Lauren from Kent, UK talks about being diagnosed with Acromegaly in her early twenties, the battle for a successful diagnosis and how this unusually large pituitary tumour impacted her life - without dampening her spirit.