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.
This is what Sara's nominator said:
"Sara Lomas is an absolute marvel and joy to be around. She constantly challenges herself and runs/climbs/abseils through the pain living with Cushing's to raise awareness and funds for The Pituitary Foundation. Not only is she a very warm and welcoming person who has started a new support group in Nottingham, she has also been nominated for a Pride of Britain award for all her achievements as a Pituitary Foundation volunteer."
This is what Sara told us:
What’s your story?
What an honour to be selected as a Pituitary Hero.
I was diagnosed with Cushing's Disease in 2022, had successful pituitary surgery that year that caused temporary AVP-D, and am now happily in remission. In hindsight I probably had the disease for about 10 years and by the time I had my surgery I was very poorly and felt very scared and lonely. I turned to the internet for answers and discovered lots of them through The Pituitary Foundation and the Cushing's UK Facebook group. Suddenly I felt supported and consequently stronger. I decided I needed to help others get the support they need.
Why you got involved?
My recovery from Cushing's is slow and difficult. However, I started fundraising for the charity by setting myself challenging goals and asking people to sponsor me. I've climbed a mountain, competed in a 10K run, half marathons and marathons, done bake sales, abseiled off the roof of a hospital, completed one million steps in a month, and got shortlisted for a Pride of Britain award for my efforts. I've set up the Nottingham Support Group and become an Ambassador for the Charity, hoping to keep making a difference to the lives of those affected by pituitary diseases.
What would you like to see happen in The Pituitary Foundation for next 30 years?
Going forward I would love to see the charity continue to grow and offer support groups in all areas of the UK as well as many more online events for those less mobile. It's been great to see the charity expand their psychological support and I hope this continues. It would also be fantastic to see them better represented within hospitals so patients know how to access more information and support. Knowledge is power after all. The Pituitary Foundation is a truly amazing charity, I've met some wonderfully inspiring people since I started volunteering with them and I look forward to continuing to support them in the future.
This is what Steve's nominators said:
"Steve, to me also known as the Happy Hippo, initiated the Birmingham Pituitary Patient Support Group back in 1995/96'ish and headed this very successfully for many years. I don't know all that Steve has been involved with but I believe he has been a Telephone Buddy, proof reader, given website support, taken part in training events, spoken as an 'expert patient', attended professional medical seminars and conferences on behalf of the Foundation & no doubt other things that I am not aware of."
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This is what Steve told us:
I was diagnosed in 1987 with acromegaly. I underwent surgery in 1988 and radiotherapy in 1992. I have been involved with The Foundation almost from its launch. I formed and ran the Birmingham Support Group for many years. I was a Foundation Trustee and also worked on the patient telephone helpline for 14 years. I enjoyed working on the helpline knowing that I helped many patients over the years. I currently support The Foundation at various endocrine events and I also proof read our magazine Pituitary Life. I share my experiences as an expert patient with a number of endocrine research projects.
Marie's nominator said:
"Marie is the leader of a support group for patients with Cushing’s. But she isn’t just that, she is so much more. Not only does she bring together, support, and truly care about people with Cushing’s, but she is a strong advocate for those with the disease. She is the founder of the Conley Cushing’s fund, too!"
This is what Marie told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it? Why you got involved?
My journey began in 2012 when I was diagnosed with Cushing’s after three years of misdiagnoses and consultations with multiple specialists. Following a failed brain surgery, I underwent a bilateral adrenalectomy. Two years later, I had the lower right lobe of my lung removed due to a suspected ACTH-producing tumor. Additionally, I faced PMDD caused by a pituitary imbalance, leading to a total abdominal hysterectomy with bilateral salpingo-oophorectomy. Like most Cushing’s patients, I still continue to have daily challenges, but I will not allow this disease to define me.
In the early months after my adrenalectomy, I felt a strong need to help families understand this challenging disease, as my own family—my husband, parents, and six-year-old son—struggled to cope. I also wanted to assist medical professionals in recognizing and diagnosing Cushing’s disease earlier.
In July 2014, I founded The Conley Cushing’s Disease Fund to support patients and their families. Our mission includes creating awareness and providing advocacy training by collaborating with medical professionals, hospitals, and organizations. We aim to equip medical professionals to identify Cushing’s disease more swiftly and manage its symptoms with empathy.
Today, our support group spans six states with 75 members. We are proud to celebrate the 10th anniversary of our Kickin’ Cushing’s to the Curb awareness and fundraising event and have trained over 1,700 individuals in early diagnosis. In 2017, I advocated for creating the PA Rare Disease Advisory Council and served as its co-chair. I also serve on the Cushing’s Support and Research Foundation board.
My journey is driven by a passion for improving the lives of those affected by Cushing’s and fostering early and accurate diagnosis within the medical community.
What would you like to see happen in The Pituitary Foundation for next 30 years?
Your organization is an invaluable resource for patients with pituitary disorders, and your outreach and support are remarkable. In the next 30 years, I would love to see more materials specifically designed to support family members. Families often struggle to understand the complexities of these diseases, and they may lack the knowledge and language to provide the empathy and support their loved ones need. By offering more educational resources and guidance for family members, we can help them become better equipped to navigate these challenges together.
Pat’s nominators said:
“Pat has been with the foundation since 1999! She came with her wealth of excellent customer service experience and being a pituitary patient and made the foundation what is it today. She has given her time, energy and care to making the foundation function for as the head of patient support services. Her attention to detail and enthusiasm has stayed the same throughout her journey here. She is known to many, in the field of Endocrinology, volunteers, patients and corporate companies. She has dedicated her life and work to providing the best possible service to pituitary patients and their families.
Pat never stops giving her time to the groups around the country, along with being on the helpline & running the Liverpool pit pat group
Pat, is such a fantastic help, talking to newly diagnosed pituitary tumour. the info she provides is fantastic, to put people at so much ease & a brilliant knowledgeable.”
This is what Pat told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
My symptoms began in 1985; periods stopped, I had an insatiable thirst and awful headaches. Saw GP, I was checked for diabetes, and I was diagnosed with migraine. I struggled through many months, drinking and weeing excessive amounts day and night, and the headaches had become excruciating.
Finally, my diagnosis, and thanks to my surgeon, Mr Foy, abscess removed, headaches resolved. My family went through such a lot too – my daughter was only seven years old at the time.
Why you got involved?
In 1995, when I first heard that this charity had been launched, I spoke to Sue Thorn, one of our Founders. I soon became a volunteer and started Liverpool Support Group in 1996. The support and information we gained was so needed, as there was nothing like this before. For our charity to have continued providing the support and information we do for 30 years is just incredible
What would you like to see happen in The Pituitary Foundation for next 30 years?
I have panhypopituitarism, and try to make the most of every day (some days of course can be hard), but one small thing to look forward to can be everything. I have met so many lovely people throughout my time with The Foundation; you are brave, empowering, definitely heroes, and for me it’s been a privilege to walk our pituitary journey together. Thank you
Miles' nominator said:
"Miles Levy and his team at the endocrine department at the Leicester Royal Infirmary have really looked after me since I self diagnosed myself with a Pituitary tumour. My GP wouldn’t listen to me even though I had 98% of the classic Acromegaly symptoms. On my first visit to Miles in 2018 I felt reassured I was in the right place to be listened to at last. They still look after me now with once a year check ups but I know they are always on the end of the phone if I need them. They are all fantastic and think they should be shown appreciation with an award."
This is what Miles told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
I've been interested in endocrinology ever since I was a teenager at Chigwell School. My Biology Teacher Dr Applin (who had a huge combover) enthused about the pituitary gland being the 'conductor of the endocrine orchestra' and I was hooked. I was fascinated by the way the pituitary gland develops, making it the link between the outside and inside world. I went on to study medicine at The London Hospital and Barts Medical school and all my role models were endocrinologists. I have always been amazed how a gland so small, can have such a major effect on the body.
Why you got involved?
I went on to specialise in endocrinology and my first research project was on headache and pituitary tumours. I wrote an article called 'Pituitary Tumours What a Headache!' and was inundated with patients from the Pituitary Foundation wanting to help. Since then, I've always loved looking after patients with pituitary problems and continue to find it fascinating. Together with colleagues we go to Uzbekistan to help set up pituitary services which is a joy. Recently I have helped the campaign to change the name of Diabetes Insipidus to AVP-D which has been a real team effort between colleagues and patients.
What would you like to see happen in The Pituitary Foundation for next 30 years?
The main thing is to keep it alive. It is a very difficult time financially for charities like the Pituitary Foundation. It requires the goodwill of patients and clinicians to give good and helpful information to people and families who may be struggling to get good information and access to treatment. With our work around the world with name change to AVP-D, I have seen the high regard in which the UK's Pituitary Foundation is held, and we should work on forging stronger bonds with our international counterparts such as WAPO (World Alliance of Pituitary Organisations) and Got AVP-D. The future is bright!
This is what Gail's nominator said:
"Gail gave me great tips on how to manage my condition. I received information and leaflets which was extremely helpful. We organised a patient conference in Ireland, Gail flew over and gave hope to many of us who had been recently diagnosed. She worked tirelessly despite being a patient herself. Her advice was empathetic yet practical. I am grateful for meeting her, she gave me an honest, no-nonsense approach to the conditions which very much helped me at the time."
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This is what Gail told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
In 1993, there was no Pituitary Foundation and I wanted to start up something to support pituitary patients but, this would very much have been, a ‘one-man band’. Contacting the SfE, I was invited to the National Launch on 23rd 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 naively said “I’m happy to co-ordinate”. Fatal last words! I became a trustee and as a volunteer took on the role of National Co-ordinator helping to kick-start 28 support groups around the UK and Southern Ireland.
Why you got involved?
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 trans sphenoidal surgery, radiotherapy plus fighting to recover, I just knew other pituitary patients needed support and to know they were not alone. In 1995 the then Portsmouth & Southampton support group launched and together with great committee members over the years, I am proud to still head this as an Area Co-ordinator 29 years later.
What would you like to see happen in The Pituitary Foundation for next 30 years?
If I’m around for another 30 years, it would be great to have more local support groups and the necessary championing of these groups. The Foundation’s history with LSGs shows this to be an integral element for increasing and maintaining the vital local link with pituitary patients. An amazing achievement to go down in history would be an Epipen type device for adrenal insufficient patients in the event of an emergency!
Sue's nominator said:
"Always so supportive of the charity whether that's speaking at events, volunteering her time or writing articles for Pituitary Life. Sue has done masses for The Pituitary Foundation over the years and is a true hero in every sense of the word."
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This is what Sue told us:
- What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
I was introduced to the Pituitary Foundation by one of my PhD supervisors when I was studying at the University of the West of England 20 years ago. I worked on the first needs analysis study as part of my professional development as a psychologist.
- Why you got involved?
Our initial research showed that we’d barely scratched the surface in terms of understanding how people are affected by pituitary conditions. Trying to understand and support patients through research and the development of psychoeducational materials has become something of a passion – it feels like I’m doing something useful.
- What would you like to see happen in The Pituitary Foundation for next 30 years?
I’d like it to be easier for people to get to the Foundation with better signposting from the NHS. I’d like to see the psychoeducation materials expand and for the Foundation to introduce some training for healthcare professionals so that they feel more confident in supporting patients with the psychological aspects of life with a pituitary condition.
Hannah's nominators said:
"Hannah has recently started the Coventry support group with so much care, love and skill. Hannah constantly tries to come up with new and supportive ideas for everyone, is super welcoming and very engaged in her community. She has also presented her personal story at the Cushing's Day in March 2024 which inspired many people present and led to lovely conversations throughout the day. She is also a fundraiser and she singlehandedly has raised over £600 for the group which she partly uses to get good catering, book warm and comfortable rooms among other things. She has truly done so much more than you would expect from one volunteer and absolutely deserves to be recognised for all the hard work and commitment she selflessly dedicates to the cause."
This is what Hannah told us:
What’s your story? Why did you start doing what you’re doing, how long have you been doing it?
I started to get poorly when I was 30 years old I gained a lot of weight, my mental health deteriorated I had severe acne and my bones were brittle. It took me 2.5 years to get diagnosed with Cushing’s Disease, after having numerous doctors’ appointments with no help I eventually diagnosed myself after googling my symptoms and got referred to an endocrinologist at University Hospital Coventry and Warwickshire.
I gained nearly ten stone in weight by the time I had my surgery and was extremely unwell.
I had transsphenoidal surgery in 2021 to remove the tumour which was a success and then had adrenal insufficiency for 2 years.
I’m still in remission and I’m healing myself each day. I finally feel happy again.
Now I run the Coventry support group to help others with pituitary conditions, I have been running the group since October last year and we have had 6 group meetings already and walks in the park which people really enjoyed.
I’m currently planning the next event a Picnic in the park a chance for us all to get together, these groups not only help people from our community they also help me too.
- Why you got involved?
Meeting others going through such life changing conditions really makes me feel grateful and I am inspired by their strength and resilience it’s an honour for me to be able to meet them!
I chose to run this group as I want to give back and share my experiences with everyone to try to help. I know how isolated you can feel with a pituitary condition, a rare disease and by running this group and building a community we can help each other and not feel so alone!
The pituitary foundation is such a wonderful charity and I know that the support, the groups and all the hard work they do really is so beneficial to everyone with a pituitary condition I am grateful I get to work with them and get to meet such wonderful people throughout my journey.
- What would you like to see happen in The Pituitary Foundation for next 30 years?
Over the next few years I hope to continue to grow this group and even go further afield and help others that don’t have a support group in their area. I plan to work closely with the Pituitary Foundation and help with raising money, I also would love to host a Gala event too to help raise money for such a wonderful cause.
I would love to see the pituitary foundation continue to grow and to raise more awareness for pituitary conditions, the work they do is commendable and truly amazing!
