Starting in July, The Pituitary Foundation will now have an active Local Support Group in Edinburgh! This exciting news is thanks to a fantastic volunteer, Heather, who has offered to set up and run the new group.
To celebrate the start of the new group, we wanted to share Heather’s story. Read on to find out more about her diagnosis, living with her pituitary condition and why she felt inspired to start this group!
Heather’s Story
How it started
Hi, I’m Heather and I’ve been living with my pituitary conditions for the majority of my life.
Since I can remember, from a very young age, I suffered from severe headaches and sensitivity to light. No amount of painkillers would help my headaches and it got to the point where it was a rarity to be headache-free. Numerous doctors and psychologists couldn’t find anything wrong with me and I was more or less labelled as a drama queen.
When I was 14 years old, I started to notice issues with my peripheral vision (it was pretty much gone) and my headaches became more intense and unbearable. One day, during my NJROTC class in my American high school, I was instructed to do push-ups by my commanding officer when my headache was a 10 on the Richter Scale.
After about 10 press-ups I passed out and had what was later described to me as a seizure. I was rushed to the hospital in an ambulance and had a CT scan. I can still remember the look on the doctor’s face as he told me and my mother that I had a growth in my brain. I genuinely thought he’d gone into the wrong patient’s room because there was no way this could be my reality.
What ensued afterwards was a complete blur that felt like an eternity but was in reality only a month between that dreadful date of discovery and me having a craniotomy to remove the craniopharyngioma. Little did I know at the time, but this was only the beginning, rather than the end, of my pituitary issues.
What came next
The 9-hour surgery was considered a success in that they removed the majority of the cyst, however we were advised that the craniopharyngioma was so tightly wrapped around the pituitary stalk that when the cyst was drained, it became very difficult to remove all the tissue from the stalk, so a small amount was left which “should not grow back.”
My 2-day hospital stay then turned into 2 weeks as they eventually realised the pituitary stalk had been severed during the operation, which meant my pituitary gland was no longer connected to the rest of my brain. Being the master gland of the entire endocrine system, this then meant I had panhypopituitarism as a result and would need to take all hormones synthetically for the rest of my life.
My cyst has since grown back but has stayed stable and I now have AVP deficiency (previously known as diabetes insipidus), adrenal insufficiency, adult growth hormone deficiency, hypothyroidism, and I also take HRT. My peripheral vision, on the other hand, was completely restored (the craniopharyngioma was the size of a golf ball and had pressed on my optic chiasm causing the nerves to be flattened at the time).
Where I’m at now
Fast forward to now, over 20 years later, and I have lived my best life and not let anything stop me. I have moved across the ocean by myself to pursue studies, I’ve travelled all over the world, I work full time and also volunteer with several charities. I’ve been sky diving, I’ve swam with manatees, I’ve been to Chernobyl; I’ve quite literally not let my pituitary condition stop me from doing or achieving anything.
Having said all that, despite having an amazing support system of friends and family, I’ve felt very alone my whole life – very misunderstood and under-represented. I had only become a teenager when my life completely changed and I didn’t quite realise the extent of my condition. Yes, of course I see my endocrinologist every year but because my medication hasn’t really changed in over 20 years, it’s assumed I know the drill. It wasn’t until Covid lockdown when I was put on the shielding list and sent information from The Pituitary Foundation through my endocrinologist that it actually clicked just how serious my condition is and the severity of adrenal crisis.
HOW HAD THIS NEVER BEEN EXPLAINED TO ME?!
I went down a complete rabbit hole. I dove in headfirst into The Pituitary Foundation website and read everything over and over again until it sank in. It all finally made sense.
Here I was, 22 years after my surgery, finally understanding my condition. I couldn’t believe there was a charity for people like me… dedicated specifically to conditions like mine!
It was also around this time that my endocrinologist changed and my new specialist asked why I wasn’t on growth hormone replacements. Quite frankly, I was told I didn’t need it back in the ‘90s and it had never been revisited.
Six months after starting growth hormone, I felt like a completely new person. My whole life I was so fatigued and just thought that was how I was meant to feel as I knew no different.
Fast forward again a few years down the road and I’ve stayed up to date with The Pituitary Foundation as a silent member. I eventually attended a meetup in Manchester and was blown away by the support network, the information, and most of all being able to speak to others who knew exactly how I felt. That is something that is so precious and should not be taken for granted. This is exactly why I wanted to start a support group where I live. We are each others’ biggest allies and can learn so much from one another.
We are each others’ biggest allies and can learn so much from one another!
The Pituitary Foundation has been an asset not only for me, but also my husband and family. The materials produced by The Pituitary Foundation are written in a way for anyone to understand. At the event in Manchester, my husband was able to speak to other spouses and hear other people’s stories who were so similar to mine. I was able to speak to others who were more newly-diagnosed with the same condition as me. Who knew this sort of support network existed?!
I hope to create a safe space for anyone to come along and share, listen, celebrate and uplift one another.