For Rare Disease Day 2025, Emily shares her story of how a thunderclap headache and numb leg led her to be diagnosed with pituitary apoplexy and acromegaly.

Emily's story

At just 22 years old, my life was turned upside down after a sudden medical crisis led to a brain surgery that would change my life forever. What began as an unexpected thunder clap headache, combined with a numb leg, became a life-threatening emergency when doctors discovered a brain apoplexy (bleed) caused by a tumour, and a rare condition known as acromegaly.

Prior to this, I had always been healthy, full of energy and the happiest in the room but this all changed when I experienced a sudden bleed in my brain; an event known as a pituitary apoplexy. The tumour, which had been quietly growing in my pituitary gland, was secreting excess growth hormones, leading to a range of disturbing symptoms that I had struggled with but hadn’t fully understood until that moment. I had no idea what was happening to me.

Consultants quickly diagnosed me with acromegaly – a rare disorder caused by a tumour on my pituitary gland that releases excessive growth hormone into the body.

The operation to remove the tumour was urgent. The longer the tumour remained, the greater the risk to my life. I didn’t know what to think when they told me how serious it was. My world just seemed to stop.

The surgery was a success (for now) but the road to recovery was far more difficult than I could have anticipated. Over the following weeks and years, my physical and emotional world was turned upside down. In the hospital, I endured more than 589 blood tests, MRI scans, CT scans, PET scans, ultrasounds, X-Rays, glucose intolerance tests, eye tests and more, as doctors worked tirelessly to monitor my condition. Each needle, each test, was a reminder of the fragility of my body and my future.

There were days when I felt like a pin cushion. It was hard to keep track of how many blood tests I had but I knew they were doing everything they could to help me.

While the surgery saved my life, the physical toll was huge. The changes caused by the tumour — and the subsequent removal of it — altered my body in ways I wasn’t prepared for.

Thankfully, throughout my recovery, I was never alone. My parents, who had been by my side since the first terrifying moments in the hospital, were my constant source of support. I couldn’t have made it through without them. They were there every step of the way. Mum sat with me through the long nights and Dad kept telling me I was going to be okay, even when I didn’t believe it. My Dad even went on to run a marathon to raise money for The Pituitary Foundation.

My partner was also a huge source of support for me. He never left my side. He would talk to me, hold my hand and remind me that we were in this together. I don’t know what I would have done without him.

During the worst of it, I also found comfort in Remi, my little cavapoo. Every time I was scared or upset, she’d jump up on the bed and curl up next to me and made me feel less alone.

I’m still recovering and the emotional and physical challenges have been overwhelming at times. The lingering effects of the tumour and the surgery have left me with changes to my body, my health and my sense of self. But I still want to find a way to move forward.

I’ll never be the same person I was before but I’ve learned that strength doesn’t always mean being the same. It means pushing through the pain, finding hope when you feel like giving up, and knowing that there are people who love you no matter what. Life can change in an instant, but if there’s one thing I’ve learned through all of this, it’s that you can always find a way to rise above. Not every disability is visible!! 

Thank you Emily for sharing your story. If you would like to share your story with the community, please email [email protected]. All opinions and experiences expressed in stories are those of the community member and do not necessarily reflect the views and opinions of The Pituitary Foundation.

To mark Rare Disease Day 2025, we're showcasing stories from our community to raise awareness of rare diseases and the way they can impact people's lives. In his story, Jerome describes the symptoms he experienced in the lead up to obtaining a diagnosis and the ways his condition impacted his life and routine.

Jerome's story

In my early 20s, I noticed a slight change in my libido. I went to the doctor and they said that because of my age there was nothing to worry about. They suggested taking medication but I didn't want to do this as I figured my problems were related to anxiety, so I just left it be.

As the years went on, the problems I was experiencing just got worse and worse. I assumed it was down to low mood and feeling down. Fast forward 5 years and I was training for the Loch Ness Marathon, at the mediocre time of 5:46. In the weeks that followed, I found I was unable to recover properly and was suffering from extreme fatigue. I kept being late for work at 9am, as a result of sleeping in, even though I previously was used to getting up at 6am.

Then all my joints started to ache and become stiff, to the point that most movement hurt me and I couldn't move fast at all because of the pain I was in. The strangest thing was that I was crying at basically anything and I just felt like a shell of my former self.

Following this, I quit the gym and stopped working. I felt truly useless for the first time in my life. I had my blood tested by the doctors after admitting to myself that I was ill. The doctors rang me very quickly, telling me they thought I had a benign tumour, blocking my pituitary hormones. After a few tests and an MRI, they found a lesion that had begun to bleed on to my brain, which is what made me feel so rough.

On the day my results came in the doctors drove out to me to give me cortisol because I'd not had any in a while. In the months that followed, I slowly got back to normal life. Finally, I'm at a point where I can run again and work and life is feeling a bit more normal.

I'm now trying to train again for the Loch Ness Marathon and am raising money for The Pituitary Foundation. I hope to raise funds and awareness for a charity that helped me understand what was happening and understand how common my experiences are within the pituitary community.

If you would like to donate to Jerome's fundraising activities, you can do so using his Just Giving Page. You can also keep up with his running journey by following his Instagram page @runningwithrome. We want to say a huge thank you to Jerome for sharing his story with us and for working so hard to raise funds for The Foundation!

If you would like to share your story with the pituitary community, please email [email protected]. Views and experiences expressed in stories of those of the community member and do not necessarily reflect The Pituitary Foundation.

To mark Rare Disease Day 2025, we're showcasing stories from our community to raise awareness of rare diseases and the way they can impact people's lives. In her story, Gail Weingartner, a founding member of The Pituitary Foundation, shares her experience of being diagnosed with a pituitary condition and how this led her to kick-start what became a national support group service, offering support groups at 28 locations across the UK. ⁠
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To this day, Gail is still an acting volunteer with The Pituitary Foundation, working as a Support Group Leader for the Solent and Isle of Wight Support Group. Thank you Gail for your many years of dedication to the charity and for sharing your story!

Gail's story

I married my lovely husband Rod in October last year, who is so very supportive & understanding of my ‘pain in the botty’ pituitary condition! A key hobby for us both is riding out on our motorbikes & we do our best tackling Ceroc dancing once a week. We have a joint love of Scotland and Greece, and I practice my Greek language skills whenever possible. I started up a pituitary patient local support group in 1995 and now head the Solent & Isle of Wight group as a Support Group Leader.

I remember the awful experience (understatement) happening over several years leading up to me diagnosing myself as a pituitary patient. My personal ‘hell’ whilst thinking I was going bonkers; my GP only suggesting beta blockers and anti-depressants. That was at the end of 1992 and following transsphenoidal surgery, radiotherapy plus fighting to recover, I just knew other pituitary patients needed support and to know they were not alone; that is how I became involved as a founding member of The Pituitary Foundation.

In 1993, there was no Pituitary Foundation and I wanted to initiate something to support pituitary patients, but this would have very much been a ‘one-man band’. On contacting the Society for Endocrinology, I was invited to the national launch on 23 November 1994 and remember sitting in an ante-room with 5 other patients, chatting about how to get local support groups off the ground. I naïvely said “I’m happy to coordinate” – fatal last words! I became a trustee and, as a volunteer, took on the role of national coordinator, helping to kick-start 28 support groups around the UK and Southern Ireland.

In many respects I consider myself lucky because I do manage to lead a fairly normal life (what’s normal? 😉) and I work as a charity mini-bus driver 3 days per week. Typically though, my dear little pituitary dictates that on a daily basis I don’t honestly know how I will feel. On a good day, I can rule the world but on a really bad one, I suffer a totally dreadful hangover-type feeling (no alcoholic fun the night before though), with me in bed sleeping the day away whilst my body seems to recharge its battery. Then, there are the in-between days when I could be feeling OK, another when I’m just a little under-par or the days when I’m struggling but functioning. Of course, this does make me unreliable and I then have to cancel a social engagement, motorbike ride, dancing, etc, etc.

You will hear many pituitary patients say that because our conditions are often not visible, this makes it very difficult for ‘Joe Public’ to empathise or understand. However, we are not alone with this because many other medical conditions are also rare and non-visible.

As pituitary patients, we owe it to ourselves and to those who have not yet been diagnosed, to shout loud and clear about our conditions, take responsibility for our own bodies by doing our homework and spreading the word to educate whoever may be listening.  We do of course though, need to gauge if eyes are beginning to glaze over!👍

My role as a Support Group Leader is supported by a strong, proactive committee and is very rewarding and lots of fun too. We hold 4 get-togethers each year near Portsmouth, one every year on the Isle of Wight and bi-annually at Southampton General Hospital. We often invite speakers and also hold our (what we call) patient-led meetings, where we sit chatting and sharing our experiences, hints and tips and all things pituitary, plus we always have a laugh too. 

Being a pituitary patient can be lonely at times so I feel it can really help if we are able to reach out to others facing similar, if not the same, issues. Rod always comes along to our meetings and says he has learnt heaps from doing so. I consider myself extremely fortunate that he is so supportive.

Yes, my pituitary condition has impacted on my life hugely over the years, with a couple of examples being when my then fiancé could no longer cope with our ‘pituitary situation’ and also having to leave my employment as a Purser on Boeing 747s. Life could have been so very different but I do truly believe that I am a nicer and better person as a result of my pituitary condition (I don’t necessarily see it that way on a really rough day though 🤣).  Also, and very importantly, I have made lots of lovely friends and met some amazing people whilst treading the sometimes rough path along my pituitary journey.
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If you would like to have your story shared with our community, please contact [email protected]. Views and experiences expressed in stories of those of the community member and do not necessarily reflect The Pituitary Foundation.

Interested in joining a support group? You can see dates and locations for upcoming support groups on our Support Groups page.