The Acromegaly Community: An international haven for people living with acromegaly
Acromegaly Community is an international haven for people living with acromegaly, comprising over 3,800 patients from around the world. Its president, Jill Sisco, who has worked tirelessly to develop this non-profit organisation, explains its invaluable work
First, Jill, for those who have still not heard of it, what is acromegaly?
Acromegaly is a hormonal disorder that occurs when the pituitary gland produces excess growth hormone (GH). It most commonly affects middle-aged adults and can lead to serious illness and premature death. Once recognised, acromegaly is treatable in most patients, but because of its slow and often insidious onset, diagnosis is often delayed.
The name acromegaly comes from the Greek words for “extremities” and “enlargement” and reflects one of its most common symptoms, the abnormal growth of the hands and feet. Soft tissue swelling of the hands and feet is often an early feature, with patients noticing a change in ring or shoe size. Gradually, bony changes alter the patient’s facial features: the brow and lower jaw protrude, the nasal bone enlarges, and spacing of the teeth increases. Some patients also notice fatigue, excessive sweating, skin tags, deepening of the voice, enlargement of the tongue, snoring and sleep apnea and carpal tunnel syndrome.
What is Acromegaly Community’s mission?
Acromegaly Community began in 2005 as a small group of patients wanting to support each other and has now grown to over 3,800 patients and caregivers. The mission of Acromegaly Community is to provide an emotional and communal support network for people touched by Acromegaly. We offer a central location for medical information on issues including surgery, medication, radiation and post diagnosis support. Most importantly we work to provide a network of emotional support for our Acromegaly patients, their friends and their families.
The Acromegaly Community Facebook pages are a safe space for patients and their loved ones to gain information and to give and receive support. Our groups are unique in that we interview each person before granting access to the group to protect the privacy of each member.
What support does Acromegaly Community give to the community?
The goals of Acromegaly Community are:
Raise awareness: Educate the public, medical community, and patients about acromegaly to improve diagnosis and treatment options.
Advocacy: Advocate for patients’ rights, better healthcare access and more research funding for treatments and understanding of the condition.
Research support: Promoting and funding research initiatives that aim to enhance treatment options and improve the quality of life for those with the condition.
Support and resources: Provide resources, support groups and information for patients and their families to help them navigate the challenges of living with acromegaly.
Connecting patients: Create a community where individuals with acromegaly can share experiences, find support and learn from each other.
Collaboration: To work collaboratively with all stakeholders in this space–patients, physicians, pharma and government entities.
People can check out the Acromegaly Community website at www.acromegalycommunity.org to learn more.
Can you tell us about recent calendar highlights, especially the 2024 conference?
We recently began holding regional meetings on the off years of our international conference. In 2023 we brought internationally respected physician speakers to Chicago, Illinois, Charlotte, North Carolina and Denver, Colorado to educate patients and their families.
Our biggest endeavour was our 2024 International Conference held in Phoenix, Arizona at Barrow Neurological Institute. 14 topics around acromegaly were discussed by world renowned physicians including the viewing of a live pituitary surgery during the conference!
Approximately 200 patients and their caregivers were educated and found support during this exciting event.
You can watch the presentations on our YouTube channel. Go to acromegalycommunity.org/ events to find the links.
What do you have planned for Acromegaly Awareness Day 2024?
Acromegaly Awareness Day, on 1st November, was started in memory of a very special person, Tanya Angus, in recognition of her efforts to bring this disease to the forefront. You can learn more about her battle at tanyaangus.com. Our main event will be the distribution of an awareness video made by a national company that we hope will be seen by thousands of people. We have several awareness and educational talks planned sponsored by various pharmaceutical companies. We have a great connection with pharma to educate the public on the disease. Additionally, we encourage patients to share their story on social media and we supply educational information to them to distribute.
An annual awareness day is a great time to take stock. As we look to the future, what are your hopes for the community?
My hopes for the community are that we can one day reach everyone with an acromegaly diagnosis to help empower them to be their best advocate. I also hope that the community continues to raise awareness about the disease to promote earlier diagnosis and expedited treatment.
References
[1] https://www.niddk.nih.gov/-/media/Files/Endocrine-Diseases/Acromegaly_508.pdf
Editor’s note: Reach out to us at hello@rarerevolutionmagazine.com if we can help you raise awareness of a rare disease close to your heart.
