We are delighted to bring you the important work these storytellers are doing to tell the experiences and journeys of people with pituitary and adrenal diseases to the forefront.
Behind every diagnosis is a story. In this Pituitary World News section, we will spotlight patients who have turned their personal experiences into conversations that connect others walking the same road. The patient community has always found its strength in shared stories. These patient narrators host candid conversations that speak to your experience. Share yours and participate!
Here are examples of two of the best and our very favorites. We hope tp add more narrators a other resources sharing these compelling journey and experiences.
Stay tuned to Pituitary World News for more developments and links to the permanent patient story page.
The road to diagnosis is often long and complicated and almost everyone who lives with acromegaly has a unique tale to tell. That’s why AcroTaleswas started. Because for anyone with an interest in the condition – those who are recently diagnosed, medics, family members and more – hearing the real life experiences of people who have come through the other side is not only rewarding but also life affirming.
Living with Acromegaly — and talking about it openly — takes courage. I’m Tony, & I created this channel to shine a light on the often overlooked world of Acromegaly & pituitary disorders. Whether you’re newly diagnosed, supporting a loved one, or just curious about the realities behind a rare condition like Acromegaly, hit that subscribe button & join the conversation.If you are a storyteller please contact us to add your programs to this section of our publication.
Image by Antonio López from Pixabay
© 2026, J D Faccinetti. All rights reserved.
I am happy to tell my story. I had surgery and radiotherapy for a Craniopharyngioma when I was 44 and it will be 20 years ago in September. I got my PhD after treatment – although I did have to take six months off (much to my annoyance at the time). I retired last year after 43 years in Nursing and Lecturing, but I still preach every Sunday (my next Sunday off is in the middle of January 2027 at the moment) and I am Academic Advisor to a theological Institution and currently to a research project at the University of Surrey here in the UK. My visual fields started deteriorating again about two years ago, and I developed a third cranial nerve palsy – along with macular degeneration in both eyes. I was registered as severely visually impaired last week – and I have to admit, I am a little fed up about it, but I did have a very large dose of radiation (55Gys) and it was sufficiently long ago to be conventional radiotherapy, rather than stereotactic or gamma knife, or proton beam – or anything more modern, so it was bound to take its toll eventually…. I developed a macroprolactinoma four years after treatment – and am still taking the tablets! Reducing the dose means that within three weeks I can still breastfeed the whole village !! It’s all such fun really. Most doctors I meet here haven’t got a clue about what to do with me – so it’s a good job I’m married to one really. Over the years, I’ve actually become the real expert – he can’t work out why I am never hungry, but I am one of the 4% to have hypothalamic anorexia. It’s lucky I like milk, because I am always thirsty….