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 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.
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.
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.