Patient stories

Aurora and Jenna’s Story

Aurora's journey started at just 6-years-old

Cushing’s Awareness Day – Emily’s Story

Our next story for Cushing's Awareness Day comes from Emily.

Cushing’s Awareness Day – Minal’s Story

For Cushing’s Awareness Day we want to share this story of Minal.

Emily’s Story: AVP-Deficiency

For many years I’ve been unwell and as a young woman I’ve faced many inequalities when accessing healthcare.

Ian’s story: Recovering from Apoplexy

I suffered a pituitary apoplexy. This sudden bleed into the pituitary gland fundamentally changed my way of being.

International Women’s Day – Shelley’s journey to get diagnosed with Cushing’s

This International Women's Day we want to raise awareness of pituitary conditions, so that everyone gets a quicker diagnosis, especially taking into considering the issues that women face.

Katy’s Story: My Pituitary Story

My name is Katy, I am 36 years old and have a daughter of 2 years old. When I first started having symptoms, my daughter was 8 months old, and put a lot of these symptoms down to my body adjusting after pregnancy. However, after a while I knew something wasn’t right. In January 2022, […]

My Dad, Douglas’s Story: Dad and Desmopressin!

Dad was diagnosed with a tumour on his pituitary gland, following a severe headache which we initially thought may be a bad migraine.

Rare Disease Day Stories Victoria – Living with a Pituitary Macroadenoma

I discovered I had a pituitary tumour in March 2021. I was prescribed Levothyroxine for an underactive thyroid in 2019.

Risa’s story: Living life to its fullest with Acromegaly

My name is Risa and I have Acromegaly. It was October of 2018, as I nervously awaited the results of my brain MRI. I remember utter disbelief washing over me as my Endocrinologist informed me that I had a large tumour on my Pituitary Gland and furthermore, it was causing a rare disease with a […]

Teagan’s Story: Prolactinoma and University

Teagan was diagnosed with Prolactinoma in October 2021, at just 19. She was alone in her university room, 250 miles away from home. Teagan is a student at the University of Exeter. She noticed her migraines getting more and more painful. She originally put it down to majority of her studies being online due to […]

Gary’s Story: My Prolactinoma Journey

I was diagnosed with macro Prolactinoma at the age of 31. Now at 65-years-old, I am an avid cyclist which has inspired my wife and myself to take on the famous Land’s End to John O’Groats route raising over £1700 for The Pituitary Foundation. Reflecting on the fact that years before my diagnosis, there were […]

Howard’s Story: Spotlight On Prolactinoma

Howard Pearce has been a member and volunteer with The Pituitary Foundation for some time, particularly as one of our telephone buddies. He has been a part of The Foundation since his diagnosis of prolactinoma at the age of 49. Now 76, Howard shares the importance of supporting others with pituitary conditions. “I think the […]

Isobel’s Story: Hamish the Helper Dog

I was diagnosed with Adrenal Insufficiency in 2014 after repeatedly ending up in A&E with what appeared to be an unusual asthma attack and by complete chance after a 2-week asthma ward admission, a consultant ran a Synacthen test and diagnosed me with Secondary Adrenal Insufficiency. Because the treatment for asthma attacks is the use […]

Maci’s story: Managing life and prolactinoma

Maci share's her story of balancing a busy life and having a pituitary tumour.

Nadine’s story: Living with a physical disability and Cushing’s disease

Nadine was diagnosed with Cushing’s disease in 2003, after going in for an operation to fix a broken hip. When doctors noticed how different she looked to her sister, they started doing some tests. Nadine experienced a range of Cushing’s symptoms before her diagnosis: “my face was starting to balloon. I put on weight rapidly. […]

Rare Disease Day 2023 – Lucy’s story

Lucy share's her story of living with a prolactinoma throughout her teenage years.

Amy’s story – A 10 hour operation

Amy shares her story of losing sight in her eye due to a pituitary tumour, her 10 hour long surgery and looks to the future.

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