This is our online support group for everyone affected by acromegaly. We offer a place where you can raise your concerns, ask questions and receive support from people who truly understand what you’re going through.
In addition to the support of our community members, we have medical professionals with experience in managing acromegaly joining us on a frequent basis. They will be there to answer your medical questions and provide you with guidance and advice.
Next to meeting online, we're trying to host yearly in-person events where we can connect with fellow people with acromegaly and medical professionals face-to-face.
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Hi! My name’s Dan Jeffries and I am the volunteer leading this support group.
I was diagnosed with Acromegaly in 2007 after a chance encounter with medical students.
A few years on and I am in remission and enjoying life. I write music and like to be creative. I am also a Volunteer Ambassador for The Pituitary Foundation, a trustee of Medics 4 Rare Diseases, organise a yearly ‘meetup’ for acromegalics, and now really excited to be producing AcroTales, a podcast about acromegaly. In 2015 I published my memoir, Me, Myself & Eye.
Our online meetings take place online every 3-4 months. Please fill out the contact form to find out more about the group and our next meeting.
We look forward to seeing you!
Meetings
No upcoming events.
Enquire about Support Group - Acromegaly Online
This is our support group for everyone affected by pituitary conditions from 18 years up to 30. We offer a place where you can raise your concerns, ask questions and receive support from people who truly understand what you’re going through.
Be it questions about how to navigate school, university or your first job, this is a space to ask and discuss them. We will host frequent online Q&A's with medical professionals as well as online meetups. Additionally, we will try to meet in person at least once a year. This group is led by Aleha and Hannah who span an age range from 18 to 27.
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Hello everyone! My name is Aleha and I am 18 years old. I’ve had Panhypopituitarism from birth but was diagnosed at 3 years old. The world of medicines and hospitals is all I have ever known and that has come with many challenges. At any age, a chronic illness is a difficult concept to come to terms with. When I was 17, I went to a Pituitary Foundation event but was the youngest there. Fortunately, that’s where I met Kim, who works for The Pituitary Foundation and was interested in starting a support group for the youth which was always a dream of mine. I hope this group shows children and young adults that they are not alone. There is someone out there who understands the feeling of isolation and frustration when living with a pituitary condition at a young age. Despite how it feels, your illness isn’t your weakness, but your drive to do something great with what you’ve been given.
![](https://www.pituitary.org.uk/app/uploads/2023/09/hannah-picture-300x292.jpg)
Hey everyone, my name is Hannah. In 2019, I was diagnosed with a pituitary adenoma after over a year of being misdiagnosed. I was in my first year of work, post-uni, when I had my operation which was tough and it took me a long time to recover. In 2020 I was diagnosed with Hypopituitarism as a result of the operation. I have experienced PTSD and have health anxiety as a result of being misdiagnosed for so long and due to losing some vision in one of my eyes. I would love this young people’s support group to be a forum to discuss living with a pituitary condition whilst working/being at uni/enjoying everyday life. I now work in international energy and frequently travel for work which I love! I look forward to making this support group a success!
If you would like to attend our next meeting or get in touch, please fill out the contact form below. You can also let us know any questions or concerns.
Unfortunately, this group cannot accommodate for under 18s due to policy reasons.
We kindly ask parents/carers of children with pituitary conditions who are younger than 18 not to attend these meetings to ensure this is a space for young people in the mentioned age range only. We are currently looking into ways how to create a supported space for children under 18 years old and their carers/parents and will keep you updated on that.
We look forward to hearing from you!
Meetings
No upcoming events.
Enquire about Support Group - Young People Online
The Nottingham Support Group provides much needed support and information for people through meetings. We usually hold 3 or 4 meetings a year.
Everyone is welcome at meetings and you will find that they are a friendly and informal atmosphere. We try to host different activities over the year, including Q&A's with expert speakers, informal meetups for people living with pituitary conditions, and events for patients, their families and support network.
If you have any questions or would like to be contacted about the next meeting, please fill out the contact form below.
Enquire about Support Group - Nottingham
This is our online support group for everyone affected by Cushing's. We offer a place where you can raise your concerns, ask questions and receive support from people who truly understand what you’re going through.
In addition to the support of our community members, we have medical professionals with experience in managing Cushing's joining us on a frequent basis. They will be there to answer your medical questions and provide you with guidance and advice.
Our meetings take place online every 3-4 months. Please fill out the contact form to find out more about the group and our next meeting. Follow this link if you would like to join the Facebook group.
We look forward to seeing you!
Enquire about Support Group - Coventry
The Coventry Support Group provides much needed support and information for people through meetings. We usually hold 3 or 4 meetings a year.
Everyone is welcome at meetings and you will find that they are a friendly and informal atmosphere. We try to host different activities over the year, including Q&A's with expert speakers, informal meetups for people living with pituitary conditions, and events for patients, their families and support network.
You can also find us on instagram @coventrysupportgroup.
If you have any questions or would like to be contacted about the next meeting, please fill out the contact form below.
Upcoming Meetings
No upcoming events.
Enquire about Support Group - Coventry
The Liverpool Support launched in June 1996, supporting patients and their families from Merseyside - Liverpool, Wirral plus some from the North Wales area.
We are delighted to be meeting up again to re-launch the group – it’s been over three years since our last meeting. Everyone is welcome to attend and you will find that it is a friendly, informal and caring atmosphere.
If you have any questions or would like to be contacted about the next meeting, please fill out the contact form below.
Upcoming Meetings
No upcoming events.
Enquire about Support Group - Liverpool
The Bristol Support Group provides much needed support and information for people through meetings. We usually hold 3 or 4 meetings a year.
Everyone is welcome at meetings and you will find that they are a friendly and informal atmosphere. We try to host different activities over the year, including Q&A's with expert speakers, informal meetups for people living with pituitary conditions, and events for patients, their families and support network.
If you have any questions or would like to be contacted about the next meeting, please fill out the contact form below.
Upcoming Meetings
No upcoming events.
Enquire about Support Group - Bristol
Our online support group for everyone affected by prolactinoma offers a place where you can raise your concerns, ask questions and receive support from people who truly understand what you’re going through.
In addition to the support of our community members, we have medical professionals with experience in managing prolactinoma joining us on a frequent basis. They will be there to answer your medical questions and provide you with guidance and advice.
Our meetings take place online every 3-4 months. Please fill out the contact form to find out more about the group and our next meeting.
We look forward to seeing you!
Jess Buck
After being diagnosed with a prolactinoma in 2011 when she was 18, Jess turned to The Pituitary Foundation for help and support after she spotted one of our leaflets in her hospital. She has done lots of fundraising events Four Falls Trek and Snowdon and Ben Nevis climbs. Jess loves hearing from others with pituitary conditions and enjoys trying to help those with a prolactinoma. She is very excited to create this safe space where people can share their stories, discuss their symptoms and generally feel supported throughout their pituitary journey.
Meetings
No upcoming events.
Enquire about Support Group - Prolactinoma Online
The Sheffield Support Group meets to provide a welcoming support network for anyone affected by pituitary conditions in the area, a chance to discuss and meet and support others. The group holds sessions every three months.
Please do get involved and support the group by attending meetings. If you’d like to join the group or find out more please get in touch using the contact form below.
Upcoming Meetings
No upcoming events.
Enquire about Support Group - Sheffield
The Northern Ireland Patient Support Group is for the support of all pituitary patients, relatives and carers. The group provides peer support, networking, sharing of experiences and liaising with our local pituitary unit at the Royal Victoria Hospital Belfast to optimise patient experience.
Over the last few years we have met virtually via Zoom. More recently we have commenced in person meetings and we plan to have a mix of both in the future. We tend to meet every two to three months and hopefully we will have some information sessions or medical talks at future meetings.
The group is run by Ben Loughrey, who is an endocrinology specialty trainee in Belfast. If you are interested in being kept in the loop or in joining any of our meetings please contact Ben using the contact form below.
Upcoming Meetings
No upcoming events.