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© 2024 Dan Jeffries
Description
AcroTales is a series of interviews with people living with Acromegaly - a rare condition caused by a benign tumour growth in the pituitary gland.If often takes 6-10 years for Acromegaly to be diagnosed and patients usually have a complicated journey to diagnosis. Acromegaly causes an excessive release of growth hormones which results in enlarged facial features, growth of hands and feet, changes in jaw and bone structures, loss of libido, visual problems and more. In each AcroTale, patient and advocate Dan Jeffries talks to acromegalics from around the world, discussing diagnosis, treatment and the effects on social and personal life.
19 Episodes
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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 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 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 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 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 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.
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