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.

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

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.

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.

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

Young People July Support Group Meeting

07/07/2024

The new pituitary support group for young people between 18 and 30 is hosting their first meeting, held on Zoom.

Enquire about Support Group

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!

Meetings

No upcoming events.

Enquire about Support Group

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