To celebrate 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.
