AcroTales

05/08/2024

What's it like living with the symptoms of Acromegaly yet not knowing whether you actually have the condition or not?

In this episode of AcroTales we meet Natalie who is based in Buckinghamshire in the UK.

Natalie's story is rather different in that she has elevated IGF-1 and a micro adenoma yet her Oral Glucose Tolerance Test (OGTT) is in range - and therefore has not yet received an official diagnosis. Natalie outlines this unique situation whilst considering what the present - and future - holds.

Listen/Watch: https://acrotales.com/natalie/

The Pituitary Foundation (UK)

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 lik...

04/06/2024

"It's probably not Acromegaly because it's rare."

How often have we heard this sentiment in the field of rare disease? I am sure Medics4RareDiseases will have plenty to say about this!

Episode 20 of AcroTales and we meet Thomas from Switzerland. He was only diagnosed towards the end of 2023 and surgery performed a few months ago, so this is is very new and fresh for him.

Listen now: www.acrotales.com/thomas

Full episode also on Spotify all all other Podcast apps. Full video available later today!

16/04/2024

"If I laughed hysterically, I would get what my friends called a 'Roz headache'."

➡️ NOW ON YOUTUBE!

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 (UK), 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.

www.acrotales.com/roz

25/01/2024

BIG NEWS! 📢

Access to AcroTales videos is now FREE! 💥

Follow the link below to watch Jill's interview in full.

Post by Dan Jeffries

22/01/2024

"I have met some of the finest people in the world because of Acromegaly."

We kick start 2024 with a personal and honest conversation with a true acromegaly advocate: Jill Sisco.

Jill needs no real introduction. 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.

Become a Supporter and watch the video interview here: https://www.buymeacoffee.com/danj.uk/acrotales-ep-18-jill-sisco

The podcast will be released later today, or listen now on the AcroTales website: https://acrotales.com/jill

20/01/2024

Did you miss us? 😉

Yes, AcroTales is back - after a two year break! 🤯 And we return with a particularly special show.

From this episode onwards you'll be able to watch the interviews too, offering an even more intimate experience. Episodes will still be available on all podcast channels; more info in the comments.

See you Monday 😎

31/01/2022

"How is life different? It's the little things: being able to buy shoes, the ring on my finger, being overall less swollen and feeling like I'm in control - rather than the tumour controlling me."

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.

01/11/2021

'Be active in managing your disease. And don't let it be a sentence. Don't let it define you.'

It's Acromegaly Awareness Day! And to mark the occasion we hear from Paul in Australia who tells his fascinating tale of diagnosis, treatment and coping the condition. And it's a bit rude in places too! If that doesn't make you want to listen, nothing will ;)

https://acrotales.com/paul_shaw/

05/10/2021

Woohoo! What an achievement! Thank you to EVERYONE who has listened, shared, downloaded and taken the time to hear the amazing tales from our acromegaly community.

Considering just how rare this condition is, it's really humbling to see such great figures in just over a year. And with many more tales to come, I'm positive we'll reach an even bigger audience.

Oh and a big hello to all of our new followers! 👋

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 rele...

04/10/2021

"I am large. I am tall. And I will never know how I would have looked like because I looked different from such a young age."

In Episode 15 of AcroTales we speak to Caroline Watson 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.

https://acrotales.com/caroline

13/04/2021

Just discovered AcroTales has two ⭐️⭐️⭐️⭐️⭐️ reviews on Apple Podcasts.

That's made my day 😊

11/04/2021

"Don't let this disease define your life; the real you is still there."

In Episode 14 of AcroTales we speak to Phil Buckley 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.

https://acrotales.com/phil

11/01/2021

"I'm from Shropshire - we all have big hands!"

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

Full episode here: https://acrotales.com/spencer

Oh and Happy New Year!

20/11/2020

Thank you everybody. YOU'RE AMAZING! 🥰

And a big thank you to all those who have shared their stories so far. Who knows how many lives you've changed and physicians you've enlightened in doing so 🙏

28/10/2020

My alter ego just wrote this ahead of this weekend's Acromegaly Awareness Day 😁

A digital magazine giving a voice to patients affected by RARE conditions and the charities that represent and support them.

19/10/2020

"I only told my family; my friends didn't know."

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.

https://acrotales.com/natalia/

07/09/2020

"The Neurologist called me on the Monday saying 'Umm...this is not what we expected.'"

In Episode 11 of AcroTales we speak to Dee from Maryland. 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.

www.acrotales.com/dee

27/07/2020

"What happens if I don't have the operation?"

"You'll go blind and probably die."

"I'd better have the operation then."

In Episode 10 of AcroTales, we talk to 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. He also considers how support from The Pituitary Foundation (UK) helped him along the way.

https://acrotales.com/richard/

26/07/2020

A huge THANK YOU and WELL DONE to all those who have contributed their stories so far. Impressive figures when you consider how unique the material is.

Sorry it's been a bit quiet of late; a couple more tales are coming your way very soon.

19/05/2020

"I've always called this the 'Boy Who Cried Wolf' disease - because it's really not visible and 'is he making it up?'."

In Episode 9 of AcroTales we speak to Larry Weigum 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.

Listen now via the website, Spotify and iTunes.

https://acrotales.com/larryweigum

16/05/2020

Hi everyone! Hope you're doing OK in these strange times. Thank goodness for podcasts, eh?

In case you were wondering, more podcasts are on there way - I just needed a couple of weeks break. In the meantime, I thought I you might like to see this rather nice message I received via Twitter this morning.

This wouldn't be possible without all those who are willing to share their stories in order to enhance the lives of others. Thank you.

08/04/2020

"I want this thing out of my head!"

In Episode 8 of AcroTales we speak to Bert Nelson 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.

https://acrotales.com/bertnelson/

30/03/2020

"I had no awareness of even where the pituitary gland was."

In this episode of AcroTales we talk to Mike from London. Mike was diagnosed with Acromegaly only a couple of years ago but has been on quite a journey since then, 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 (UK).

www.acrotales.com/mikeb

19/03/2020

"Who am I to judge a family doctor?"

In Episode 6 of AcroTales we talk to Sheila Khawaja who was diagnosed with nearly eighteen ago. She talks about her struggles to get a diagnosis, the impact it had on her life and the amazing work she now does with WAPO - The World Alliance of Pituitary Organisations.

https://acrotales.com/sheilakhawaja/

12/03/2020

"This condition is SO complicated!"

In the latest episode of AcroTales we talk to Jennie from New Zealand who - at 54 - was only diagnosed with the condition in 2018.

It's an open and honest account of living with acromegaly, the route to diagnosis and the impact on day to day life. You can hear a clip in the comments below.

www.acrotales.com/jenniewilson

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.

04/03/2020

AcroTales 004 is now available via the website and Spotify!

In this interview we hear from Rachel in the UK who - less than two weeks ago - was in hospital having her tumour removed. Hear her story of diagnosis, the impact it's had and how she's turned to video blogging on YouTube to help others learn more about the condition. You'll find the link to her blog on the AcroTales post.

http://acrotales.com/rachelbaxter/

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....

01/03/2020

And in less than a week too! :D

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 rele...

29/02/2020

In the third interview for the AcroTales launch showcase, I talk to Trinity Barnes about her diagnosis and treatment, other conditions that she lives with and how - as a nurse - she is helping her colleagues to learn more about Acromegaly.

Get the link in the comments below :)

28/02/2020

In the second episode of AcroTales, I speak with JD Faccinettii. We discuss his diagnosis, treatments and what motivated him to set up Pituitary World News as well as some fascinating medical initiatives that are on the horizon.

Have a sneaky listen before grabbing the full episode, linked in the comments below.

27/02/2020

This Saturday is Rare Disease Day. So for the next three days we'll be sharing the first three episodes recorded for AcroTales.

Episode 1 is the remarkable story of Lauren who - in her early 20s - discovered she had a unusually large tumour growth. Her spirit and determination will leave you uplifted.

https://acrotales.com/laurenbates

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. Lauren’s Photos