How long have you been a volunteer at The Pituitary Foundation, and why did you start volunteering?
I officially became an ambassador for The Pituitary Foundation in October 2023, but my connection with The Foundation goes back nearly two decades. I was diagnosed with acromegaly in 2004 and from that moment, The PF became a real source of support - its resources, and the wider community, have helped me navigate the complexities of living with a pituitary condition.
Over the years, I found myself naturally stepping into a support role - signposting others to PF resources, sharing my experiences, and offering encouragement.
Becoming an ambassador, a volunteer role, felt like the natural next step - a way to combine my personal journey and professional background to give back and help amplify The Foundation’s incredible work.
What have you enjoyed most about being a volunteer?
What I’ve loved most is being able to bring the real, lived experience of a pituitary condition into the conversation - everything from the shock and complexity of reaching a diagnosis, to the ups and downs of treatment, and ultimately, learning how to live well with it.
I’m a passionate advocate for empowering patients to speak up for better care and treatment, and being an ambassador has given me a platform to do just that. I also enjoy using my professional experience in the NHS and life sciences to support The Foundation in practical ways—whether it’s helping to find venues, reviewing documents, or contributing to strategic discussions. It’s a great blend of heart and head.
Do you have a story of your favourite moment as a volunteer?
Well, I did recently abseil off Anfield Stadium to raise funds—which was memorable, if not exactly my favourite moment!
But the real highlights for me have been speaking at two major events—WAPO and BES - where I shared my story as a patient with audiences of clinicians, researchers, and fellow advocates. I love public speaking, and these opportunities allowed me to bring a patient’s voice into spaces where it’s often missing. I truly felt like I was helping to shift perspectives.
Why would you recommend volunteering?
The Pituitary Foundation is a powerhouse of support - offering everything from information about the many pituitary conditions and nurse helplines, to mental health services and peer connections. Volunteering is a meaningful way to give back to a community that gives so much.
Whether you’ve been directly affected by a pituitary condition or simply want to make a difference, your time and energy can have a real impact.
What would you say to anyone who’s considering becoming a volunteer?
Volunteering isn’t one-size-fits-all. You don’t have to climb mountains (or abseil off stadiums!) to make a difference. There are so many ways to get involved—joining the Lived Experience Committee, supporting local meetups, writing for the magazine, or helping with fundraising. Think about what you enjoy and what you can offer, then reach out to the PF team. They’re incredibly supportive and will help you find the right fit. Just take that first step—you won’t regret it.
Meet Debbie, a member of our Board of Trustees who has supporting The Foundation since 2021.
My Story
I have been serving as a non-executive director (NED) at The Pituitary Foundation since 2021. In my role, I focus on safeguarding, information security, enhancing our approach for interacting with medical professionals and the pharmaceutical industry, including projects and supporting strategic planning, governance and outreach programs.
Why I Volunteer
My motivation for volunteering stemmed from a personal connection to the cause. I wanted to contribute my skills to an organisation that is making a significant impact in the lives of those affected by pituitary disorders. The Foundation’s mission resonated with me and I was eager to support its initiatives. When I was first diagnosed with arginine vasopressin deficiency (AVP-D, previously known as DI) in 2010 and then latterly when I became gravely ill with complications in 2019, The Pituitary Foundation offered a rare light of hope. The combination of patient-specific information and compassion helped me to feel understood, but more importantly provided practical avenues for support and expeditious treatment.
What I have enjoyed most about being a volunteer is the sense of community and the opportunity to connect with individuals who share a passion for supporting others. Working with a team that is genuinely dedicated to improving awareness and providing resources brings a deep sense of fulfilment.
Moreover, I appreciate the learning opportunities; each experience I’ve had has contributed to my personal and professional growth. In recent years, I have been fortuitous to be invited to contribute as a patient expert to a number of initiatives including; development of NHS protocols for the treatment of patients with AVP-D and COVID, information videos to educate patients and healthcare providers about pituitary conditions and available treatments and clinical guidelines for AVP deficiency involving members from both the American and European Endocrine Societies. I have also been involved in talks for patients and contributions to other groups, like the Pituitary Society and the Endocrine Society.
I am in a serendipitous position as both a research scientist and patient. This was particularly helpful in ensuring the standardisation of medical terminology to improve data interoperability and that it is correctly included in Medical Dictionary (SNOMED) for scientific and medical use. I have also been involved in liaising directly with the health agencies and drug marketing authorisation holders in response to drug shortages caused by manufacturing and supply chain challenges.
One of my favourite moments was as a contributor to the Global DI Renaming Group, as the patient representative. This resulted in the name change from diabetes insipidus to arginine vasopressin deficiency globally and publication in a number of medical journals worldwide. It was recognised that the term "diabetes" was resulting in was poor patient care due to the confusion with diabetes mellitus. I have heard inspiring testimonials from patients and physicians, where our efforts may have resulted in a patient having much better outcomes.
To anyone thinking of volunteering...
I would highly recommend volunteering because it offers a unique opportunity to make a tangible difference in people's lives. The experience not only allows you to give back but also helps you develop new skills and build relationships with like-minded individuals. I believe that being part of a cause that you care about can be incredibly rewarding and enriching.
To anyone considering becoming a volunteer, I would encourage you to take the leap! Volunteering is a wonderful way to engage with a cause that matters to you and to learn from others along the way. Whether you have a specific skill set or simply a desire to help, your contribution can be valuable. Don’t hesitate to reach out—I would be happy to share more about my experiences or answer any questions you may have.
My Story
Hi, I’m Phil, happily married and happily retired! I have two children and four grandchildren.
I suppose my pituitary journey began well over 20 years ago when the first symptoms of my prolactinoma became apparent. Several years later, after going down several blind alleys, the diagnosis was finally made, treatment began, and the tumour was removed. I’ve happily taken the tablets, creams and injections ever since. After all, they keep me well and alive!
I was living abroad at the time, and was seen by specialists in Luxembourg, France, Belgium and Germany! Truly an international tumour. I now live in the UK. After diagnosis I felt quite lost, worried and alone. I took great comfort from finding The Pituitary foundation online, and after making contact I was contacted by a telephone buddy. I found this human contact very reassuring and helped me a lot on my pituitary journey. The information available on the foundation website l also found invaluable.
Why I chose to volunteer with The Pituitary Foundation
This contact with The Foundation and a visit or two to conferences made me want to help others in similar positions as well. After some training, I became a telephone buddy. I have been a buddy for over 15 years I believe, and also had several years volunteering on the telephone help desk.
What do you enjoy most about your role?
I doubt if I have a favourite story of my contacts as a buddy, as each contact has been worthwhile and interesting. I hope I have been able to offer some useful advice through my own experiences and training, and of course a listening ear. At the very least we are able to signpost others towards useful information they may not be aware is available out there. I have also learnt much from the people I have interacted with.
I would encourage those who are able to volunteer, as it is rewarding and can be of great comfort to fellow travellers who are just starting out on their own journey. You feel a useful small part of The Pituitary Foundation team, who do so much to bring this illness out of the shadows. Contact Nesta today and see how you could help out!
How it started
My name is John Budd and I am a hypopituitarism patient, and now also the support group leader for The Pituitary Foundation Oxford Support Group, along with my very supportive wife Cathy.
My Story
My pituitary story started in October 2010, when I was working as an IT management consultant, and travelling frequently. The first time I realised there was something wrong was while we were on holiday, cycling on the wonderful Mining Trail in Cornwall. I suddenly felt abnormally weak and weary and I had to stop cycling. Eventually after a good rest, I managed to complete the route.
It took over a year to get my condition diagnosed. During that time I had lots of medical appointments with all kinds of specialists, but my eventual diagnosis was somewhat accidental - I was being investigated by a neurologist for an unrelated problem and a MRI scan showed an enlarged pituitary which was fortunately noticed. Blood tests confirmed a hormonal imbalance, and the neurologist put two and two together and realised I had a pituitary problem. I started on some initial replacement hormone medication shortly after and felt my condition improved, though I was nowhere near back to normal.
Some months later I was sitting in the departure lounge of Edinburgh airport in September 2011 after a hard day with a client group and I suddenly felt exhausted, and realised that I just couldn’t keep working. I was constantly weary, had mood swings, was depressed, I was worrying about my health, and had become very introspective. I stopped working shortly after that.
When attending a Pituitary Foundation conference in Sheffield in 2012, I heard about growth hormone and the benefits it brought to some patients. This was something that my own endocrinologist had never suggested but I was determined to try it as and eventually had it prescribed. It helped me a lot with improved energy and mood.
In December a scan revealed that my tumour was now very close to the optic nerve, so I had transsphenoidal surgery to remove the pituitary growth, which has not regrown to date, though I continue to need hormone replacement. Throughout this, my wife Cathy was so supportive that I manged to get through the worst of it and set about finding some kind of new equilibrium in my life. I am still challenged in various ways, but things have improved considerably.
Finding The Pituitary Foundation
When Cathy and I first came across The Pituitary Foundation in May 2012, we were at a stage where we were struggling with trying to understand this condition. Attending the conference in Sheffield that year was the best thing we could have done. Good grief! I wasn’t the only one with these weird feelings, mood swings, lack of energy, and other problems! Here was a whole room full of people with similar issues. In a way this was sad, but it also made me realise for the first time, I am not alone with this problem.
We learnt so much from the experts and took much comfort from meeting others who were experiencing similar problems to us. We also learnt about the local support groups and subsequently attended our first Oxford Support Group meeting, held at one of the Oxford colleges. Cathy and I continued to attend many subsequent meetings and conferences, making a number of friends along the way.
Becoming the Oxford Support Group Leader
The Oxford Support Group moved from being hosted at an Oxford college, to a church hall west of Oxford. Cathy and I continued to attend, enjoying and learning from many interesting guest speakers over that time. In June 2017, we offered to take over the Oxford support group leader role from Mark Heath, who had done a fantastic job, and our offer was accepted.
We have continued to hold about four or more meetings a year. In 2017, through consultation with the specialist nurses at the Churchill Hospital (where most pituitary patients from the Oxford area first come into contact with the pituitary medical support services), we relocated our meetings to the hospital. I think this helped the group, as patients were familiar with this location and the specialist nursing staff were always on hand at our meetings, which proved to be a great informal way to discuss any challenges patients had. We introduced informal social meetings (mainly pub lunches) in 2019, with the aim of bringing the group together a bit more.
When Covid-19 hit us, the Churchill Hospital became impossible to use and we started using Zoom to keep the communication lines open. This proved to be very successful as we were still able to get guest speakers to join us and our attendance increased. Since Covid, we continue to hold many of our meetings on Zoom but we compliment these with regular social get-togethers.
We have had many Saturday pub lunch meetings in various locations outside Oxford, and have had several summer garden parties. We are now occasionally using the Manor Hospital in Oxford for meetings. We have had some great guest speakers including endocrinologists, neurosurgeons, a psychologist and some members of The Pituitary Foundation too. We are particularly grateful for the support given to Oxford group by Professor John Wass who regularly attends our meetings, and has provided invaluable advice and support to so many of our patients.
The future
I believe the time that pituitary patients (and carers) need the most support is when they are first diagnosed, when they may be in a state of disbelief, shock or trauma. Our hope is that all Oxford pituitary patients, but particularly those newly diagnosed, get to know about our support group so that they can realise they are not alone, that there are others enduring similar problems who they can meet and exchange experiences with and learn from. We have some very supportive people helping us in many ways, and I thank all of them for their encouragement.
Miles is a long-standing member of our Medical Committee and provides invaluable insight and support to our clinical and healthcare-related activities.
About Miles...
Miles Levy is a consultant endocrinologist and honorary professor of Clinical Endocrinology at the University of Leicester Hospitals NHS Trust. His research interests include the pituitary and adrenal gland and genetics of endocrine tumours.
He has co-led the initiative to change the name of diabetes insipidus to AVP deficiency. He is on the Board of the International Society for Endocrinology, is an elected council member for the Society for Endocrinology, is president-elect and council member of the Diabetes & Endocrinology Section of the Royal Society of Medicine, and a member of the Medical Committee for The Pituitary Foundation.
He lectures internationally on endocrine tumours and is a regular teacher at Leicester Medical School. He co-authors the endocrinology chapter of ‘Kumar & Clarke’, co-authored ‘Endocrinology at a Glance’, was editor of The Endocrinologist, editor in chief of 'You and Your Hormones', and co-editor of the neuroendocrine section of Endo-text. He still does GIM on-calls. Most importantly, Miles supports Arsenal Football Club and plays in a brilliant band called the Levy Circus.
How long have you been a member of the medical committee, and what does the role involve?
I’ve been on the medical committee for a few years, and it is a privilege to try and help patients with pituitary problems around the UK. Essentially the role involves helping The Pituitary Foundation staff like Emma, Jay, Pat and Nesta who may have clinical sense-checking questions, as well as answering clinical concerns from patients. I have also helped update some of the information material on the excellent Pituitary Foundation website with other colleagues.
There are always changes and improvements in medicine, so we want to make sure the advice is in line with state-of-the-art clinical practice. We meet online every few months, and much is done by email communication in between. I have been involved in webinars to teach patients about aspects of pituitary disease as well helping with awareness weeks on specific conditions. The face-to-face meetings I like the best as I learn more about pituitary conditions by chatting to patients who are the real experts because they live with their problems every day and I always pick up new things that I might not have thought about.
The face-to-face meetings I like the best as I learn more about pituitary conditions by chatting to patients who are the real experts because they live with their problems every day...
Why did you start volunteering?
Basically, I was asked and said yes straight away. I have always been massively interested in the pituitary gland physiology since I was a 14-year-old schoolboy in Dr Applin’s biology class at Chigwell School; he described the pituitary gland as the ‘conductor of the endocrine orchestra’ and for whatever reason I was hooked. I think if he knew I was on the Medical Committee for The Pituitary Foundation, he would be proud of me.
Every year I do pituitary endocrinology, I am more interested in it and have more questions than answers. When patients send queries to Pat McBride, I really like trying to help. There is a balance between giving good advice whilst not appearing to be a ‘backseat driver’. Patients are usually under good endocrinologists elsewhere in the UK but occasionally if patients cannot get through to their local specialist team, it can be helpful to give quick advice. Most endocrinologists are cool, and good team players, so do not mind people stepping in if it is helpful and timely.
I really enjoy being part of the bigger UK pituitary team which involves other doctors, nurses, patients and their families. I feel it helps me feel connected to the wider world of pituitary medicine and makes me realise most the stuff I worry about, other people do to, and it is good to ask for help (I do all the time)!
What have you enjoyed most about being a volunteer?
Probably the thing I am most proud of, and therefore gives the most satisfaction, is the work we have done together on renaming cranial diabetes insipidus to AVP deficiency. It has been a real collective effort, and patients have been vital in driving this forward. The ‘powers that be’ listen much more to patients than doctors. It has been massively humbling to work with dignified family members who have lost loved ones through mismanagement of this condition. I hope that if our work to change the name and increase awareness of this, and other pituitary conditions, saves some lives, then they will not have died in vain.
The really satisfying thing is that the work we have done in UK has also been adopted by the whole world and we have been a major part of this. There is much to be done together and still things we need to improve on, and I am convinced the answer is to work with patients to change the pituitary world for the better and there is loads to look forward to!
In this spotlight profile we hear from Ketan, who lives with acromegaly and is a member of our Lived Experience Committee.
My Story
Ever notice how going through something tough can give you this unexpected urge to help others who are just starting that journey? Volunteering often springs from that exact spot – turning your own "been there, done that" moments into a force for good! I started thinking, "How can I give a little back and get more involved?" Then, as if by magic, the opportunity to join their new Lived Experience Committee (LEC) arrived. I was genuinely thrilled at the prospect because I've learned first-hand just how important it is for the voices of people who actually live with these conditions to be heard loud and clear.
In all honesty, living with a pituitary condition (or caring for someone who does) can feel like being dropped into the middle of a maze blindfolded. You're dealing with a whirlwind of doctor's appointments, baffling medical jargon, emotional ups and downs, and figuring out a whole new 'normal' for daily life. It can feel pretty scary and incredibly lonely at times.
During my own "what on earth is happening?" phase, The Pituitary Foundation was a lifeline. They offer fantastic support, clear information, and perhaps most importantly, a sense of community – letting you know you're not the only one going through this. They help people directly affected and their families too. But I reached a point where I didn't just want to get help anymore; I wanted to be part of the help. Taking the understanding I'd gained – often the hard way – and turning it into a tool to help The Foundation improve things for everyone? That was seriously motivating. It felt like the perfect way to give back and make sure those hard-won insights weren't wasted.
"The goal for the committee is to bring together a real mix of people - patients, family members, carers - all sharing their unique, real-world experiences."
Before diving in, we had a chat about what the Lived Experience Committee was all about. The Foundation explained their vision: they wanted the LEC to be a key part of ensuring that everything they do truly revolves around the needs and perspectives of the people they serve. By setting up this formal group, they're making sure there's a proper structure to listen to, and actually use, the wisdom of those who've walked the walk. The goal for the committee itself is to bring together a real mix of people – patients, family members, carers – all sharing their unique, real-world experiences.
What does my volunteer role involve?
So, what do we actually do in the LEC? Our role is pretty varied and, I think, really important. We chat with The Foundation's staff and trustees, offering our perspective. We look over patient information – things like leaflets, website pages, and guides – to make sure they're easy to understand, genuinely helpful, and written with empathy (goodbye, scary medical jargon!). We also chip in on how support services are developed and delivered. The big idea is simple: services designed for patients should be shaped by patients.
This 'lived experience' angle is gold. It helps spot the little things, the potential pitfalls, or the bits of information that might be missing. It ensures that the way The Foundation communicates actually connects with the people reading it, because it reflects the practical, emotional, and day-to-day realities of these conditions, not just the clinical facts.
And you know what? Volunteering hasn't just been about giving back; it's been amazing for me personally, too. Being part of the committee and hearing stories from people with different pituitary conditions and facing different hurdles has massively broadened my own understanding. My own experience felt unique and, at times, isolating. But listening to others share their journeys has offered incredible new perspectives. When you gather all these different experiences together, you create something truly powerful that can genuinely shape better resources for others. That feels incredibly rewarding.
What have you enjoyed the most in your role?
Our LEC meetings have covered all sorts of ground, but I've particularly loved the discussions around advocacy and support. It's been fascinating to reflect on the emotional side of things – the common worries we all shared, the kind of practical, non-medical advice that would have been a game-changer back then. We had a really lively debate about how The Foundation could reach more people using different social media and online platforms, considering how everyone from teenagers to grandparents gets their information these days.
I'm genuinely excited about where we can take this. Knowing that the conversations we're having now could lead to resources that offer real, practical help to someone feeling lost or overwhelmed in the future… well, that's a fantastic reminder of why the LEC is so important.
To anyone thinking of volunteering...
Based on all this, my message is simple: give volunteering a try! The benefits ripple out way beyond the organisation itself. It's a brilliant way to grow as a person, maybe pick up some new skills (hello, teamwork and feedback!), and boost your confidence. Plus, it connects you with awesome, passionate people who care about the same things you do – say goodbye to feeling isolated and hello to belonging!
Most importantly, it’s a real, hands-on way to make a difference. Seeing your time and insights actually lead to positive change? That’s incredibly motivating. It lets you turn your own experiences, good or bad, into something constructive and contribute to something bigger than yourself. What's not to love about that?
Meet Ann, a volunteer with The Pituitary Foundation who volunteers on the General Information Helpline.
My Story
In 2007, after years of blocked sinuses and sharp head and face pains, I had surgery to remove a mucocele blockage in my sphenoid sinus. A week later I was informed the blockage was in fact a pituitary tumour that had burst into my sinus cavity. Suddenly everything made sense.
I had been on cabergoline for slightly high prolactin for several years. It didn’t meet the threshold for an MRI, so I’d never had one. Pathology from the sinus surgery revealed the tumour was growth hormone producing, although my IGF-1 level was within the normal range. I didn’t really have noticeable features of acromegaly at that stage, although my feet and hands had become wider.
I had pituitary surgery about a year later. It was only after this that my IGF-1 level started to rise and I became very unwell with debilitating head and neck pain and fatigue. A small remnant of tumour that remained around my carotid artery was to blame.
I tried various combinations of medications and had radiotherapy in 2013. In 2015, I started Pegvisomant injections, after which I started to get my life back. My symptoms didn’t disappear, but they became much more manageable and I started to look for new things for do.
The Helpline
By 2017 I was looking for a sense of purpose, something that made use of my experience and the knowledge I’d gained over the years. I started volunteering on the telephone helpline and now do a three-hour shift, twice a week.
You never know who will call or how busy you’ll be. Every call, and every caller, is different. Most calls are from patients, sometimes a partner or parent, but I’ve even had a call from an endocrinologist!
People may come with a specific query, such as looking for sick day rules for adrenal insufficiency, or information about a particular condition. Recently there have been a lot of calls about the shortage of desmopressin spray for AVP-D. In these cases, we can provide the information required or direct the caller to the appropriate information on our website or in one of our YouTube videos.
Other callers are looking for wider support. Being diagnosed with a pituitary condition can be challenging, whether it’s been a sudden, unexpected diagnosis or after many years of ill health and unexplained symptoms. Once diagnosed, managing a lifelong condition can present its own challenges. The main thing is to listen to the caller, encourage them to tell you about their situation and let them know how you might be able to help. This might included signposting to other resources, such as a Local Support Group (it’s great that we have had a number of new groups starting around the country) or a telephone buddy with the same condition. Sometimes, just being able to talk to a fellow patient is enough and provides the reassurance the caller is looking for.
Why I Volunteer
It’s wonderfully interesting to speak to people from all over the UK and sometimes beyond, and to hear about their fascinating journeys with a pituitary condition. I’ve also learnt so much more about pituitary conditions, health and living with a chronic condition.
"There's no better feeling than when a caller tells you how helpful the call has been..."
When I started on the helpline it was probably more about giving back and occupying myself. I hoped I could help but I had no idea how incredibly rewarding it would be and how it can really make a difference. There is no better feeling than when a caller tells you how helpful the call has been, or how much better they feel having been able to talk to someone who understands their situation. It’s one of the best things I’ve ever done and if you’re thinking of giving it a go, I can thoroughly recommend it.
The first World Hormone Day takes place on April 24th to raise awareness of the vital role of hormones in rare and chronic disease. Under the banner of #BecauseHormonesMatter, the campaign brings together the global endocrine community to share the small steps everyone can take to improve hormone health and to raise awareness of the signs of endocrine disease.
The Pituitary Foundation joins the European Society of Endocrinology (ESE), the European Hormone and Metabolism Foundation (ESE Foundation), and partners worldwide to put hormones in the spotlight. Building on the success of European Hormone Day over the last three years, this new global event calls for action to put hormones at the forefront of public health conversations.
Why we're supporting #BecauseHormonesMatter
The pituitary gland plays a key role in producing important hormones, like cortisol, growth hormone, oxytocin and more. It is often referred to as the ‘master gland’ because of its essential role in hormone production. This World Hormone Day, we’re putting the pituitary in the spotlight and highlighting the role of pituitary hormones in health and disease.
Watch the video below to find out more about #BecauseHormonesMatter!
Want to find out more about #BecauseHormonesMatter? Take a look at the World Hormone Day website!
Hormones and pituitary conditions
Conditions affecting the pituitary gland can have a huge impact on a person's hormone levels and function, which can have knock-on effects in other areas of their life and health. Around 70,000 people in the UK live with a pituitary condition, yet delays in diagnosis and treatment are common partly due to lack of awareness of these conditions and their symptoms. To combat this, we want to help everyone recognise the early signs and symptoms of endocrine disease.
These include:
- Unexplained weight gain/loss
- Sensitivity to cold
- Changes in appetite
- Brittle hair and nails
- Fatigue
- Dry and flaky skin
- Onset of depression
- Excessive thirst
- Signs of early or late puberty (outside ages 8-13 in girls and 9-14 in boys)
- Adult-specific: loss of libido, irregular menstrual cycles, infertility
Want to know more about hormones and pituitary conditions? See our information pages.
Want to get involved?
There are many ways you can get involved in World Hormone Day! See below for ways you can celebrate and take part in the #BecauseHormonesMatter message.
Join an event
Why not join in with one of our hormone-focused online events, to learn more about hormones and their impact on health and disease?
Get stuck in with social media!
Social media is a great tool for raising awareness and getting involved in campaigns. You can post your own content using the #BecauseHormonesMatter hashtag, or follow our social media pages to see what we're sharing.
You can also follow us on LinkedIn @The Pituitary Foundation, and on Twitter/X @Pituitary_org.
This October is Pituitary Awareness Month, and this year we are going ‘Back to Basics!’
We want to make sure that everyone knows about the pituitary gland, hormones, and the importance of both in the body. We'll also be sharing some advice on how to speak to your friends and family about your pituitary condition.
There’s lots of ways for you to get involved this October! We’ll be hosting a series of online events, sharing some specific resources, and encouraging you to speak to your community about pituitary conditions.
This is what Susan’s nominator said:
My mum is my pituitary hero because she has always been right by my side throughout my treatment. Being on cabergoline really affected my mental health and my cognitive ability so she fought my case to get me extra support in school. From paying for expensive hair products to prevent as much hair falling out as possible to researching scientific papers about how cabergoline affects cognitive function, she was always there as a shoulder to cry on, someone to celebrate with, someone to reassure me or someone to just listen. throughout my treatment I transitioned from paediatric services to adult services and it was a very rocky transition, which included the discovery that the tumour will probably be for life, and if I stop medication, I will probably have to go back on it at some point as it’s likely the tumour will grow back. My mum has always been right by my side to make sure that I am ok and as well as I can be - she is my pituitary hero 🧡
This is what Susan told us:
What’s your story?
My daughter Lucy was diagnosed with a Macro Prolactinoma when she was 15 years old in February 2019. She was started on the medication Cabergoline to reduce her tumour, just as we went into the first lockdown. During this time, she was struggling with studying at home, her medication made her feel nauseous, she was tired and her mood began to suffer. This was, however, blamed on Covid, as many teenagers were struggling. Investigating with the help of the pituitary foundation I was able to show the school how these brain tumours could cause brain fog, tiredness and lack of concentration. I was able to advocate for her to get her some extra support at school. It was not the effects of COVID, it was her prolactinoma that was causing her difficulties. It has taken Lucy time to come to terms with the way this tiny thing she calls “Brian” affects her and has changed her life plans, in making learning more difficult than it used to be.
Why you got involved?
I am overwhelmed that Lucy nominated me for this award. I have acted as any Mum would have when their child is upset and distressed by something. I have listened to lectures given by the Pituitary Foundation to try to understand the effects that this tumour has on her health. We look at ways to modify and make small changes, such as building in rest days, repetitive, chunked learning to pick up new skills, which will allow her to still do all the things that she wants to achieve in life. Thankfully she is now thriving in her new plans for her future.
What would you like to see happen in The Pituitary Foundation for next 30 years?
I would like the Pituitary Foundation to advocate for more research into the medication used to treat conditions, as there is not much of an evidence base at present on side effects, especially in under eighteens. I would also like to see it push for a greater understanding in the general population about the effects on day to day living that pituitary conditions can have on people.