ACROMEGALY
Dan's story
The surgery was a turning point: his hands and feet shrank, his features softened, and his confidence grew. He says it felt "like a plug being lifted from my soul." It was a huge shift, not just medically, but in how he experienced himself.
Living with the repercussions
Every patient journey is different, and every path to diagnosis unique. For Dan, it has now been almost 20 years since his acromegaly diagnosis.
Diagnosed with Weyburn Mason syndrome, a rare vascular abnormality, at the age of four, Dan was invited in his 30s to Bristol Eye Hospital as a test patient for students. “The examiner said, ‘Here’s the patient – what do you see?’ That really stuck with me. It wasn’t just the diagnosis, but the patient as a whole”, Dan recalls.
As student after student pointed out his large hands and protruding jaw, he initially dismissed it. “I didn't understand that at all. I just thought, no, they've completely got that wrong.” But after hearing the same conclusion repeatedly, he asked the consultant running the session for some clarification.
“Go and see your doctors - you might have acromegaly”, Dan was advised.
“Out from the hospital, I typed acromegaly into a search engine, and I knew that’s exactly what I had.” He saw his doctor the next day, beginning the path to his diagnosis.
For more than ten years, he had felt something wasn’t right. “Looking back, there were signs – my jaw had changed, I had to cut a ring off because it was so tight, I had more nosebleeds, blurred vision and retinal migraines, and I had no interest in intimacy without understanding why.” Receiving the diagnosis brought relief. “It was a life changer, like a huge rock had been lifted from my shoulders. Suddenly, I had an explanation instead of just thinking I was getting old.”
Dan underwent surgery to remove the tumor, which he describes as “like a plug being lifted from my soul.” His hands and feet shrank, his features softened, and his confidence grew.
“Within a year, I went from not writing any music to releasing it regularly – I was far more creative. It was such a huge shift – a release of everything the tumor had held me back from being.”
Today, he manages long-term consequences, including heart issues, blood pressure, and problems with his jaw and teeth. “Acromegaly itself doesn’t influence my life – not medically – but the repercussions do. You can be in remission, but it can still have a big impact.”
He highlights the need for better long-term support. “Often the focus is on the medicine, but it can be hugely upsetting to not recognize yourself anymore. Emotional support is really important to help you regain confidence and manage life.”
Dan is an active advocate for the acromegaly community, working to raise awareness and improve diagnosis and care. He has published a book about his journey, organized the first UK acromegaly get‑together in 2018–19, and produces the podcast Acro Tales, where people share their experiences of living with acromegaly.
“Right now, my quality of life is really good. I feel positive – though I might need heart surgery at some point – but overall, I’m in a good place, productive and enjoying life. I’m not worried about the future”, he concludes.
See Dan and others talk about their experiences with acromegaly at:
Acromegaly & Me
Symptoms
- Enlarged hands and feet
- Altered facial features
- Joint problems
- Muscle weakness and fatigue
- Anxiety and depression
- Headaches
- Soft tissue swelling
- Excessive sweating
- Sleep apnea
- Visual disturbances
Diagnosis
Diagnosis is usually made by an endocrinologist, often a pituitary specialist (neuroendocrinologist), although referral may be made by doctors from a range of medical specialties. In patients with symptoms of acromegaly, diagnosis includes the measurement of growth hormone levels and magnetic resonance imaging (MRI) to detect a tumor in the pituitary gland.
Treatment
Surgery and/or medical treatment, sometimes in combination with radiotherapy.
Explore more
Learn more about acromegaly.