ACROMEGALY
Darro's story
“When I was told I had a brain tumor, I freaked out and went into a mini shock”, Darro says. “I couldn’t believe what was happening and I was afraid. When the doctors listed off the possibilities of what the tumor could be, including cancer, I lost it.”
At 24, Darro was diagnosed with acromegaly.
From diagnosis to daily life
Growing up in New York as a first-generation Asian American, Darro began experiencing symptoms at 18 while in music college – severe headaches, joint pain, and mood swings. “They came so slowly I didn’t realize they were all caused by one thing”, he says.
Over time, the symptoms worsened, leading to significant physical changes, like severe underbite, swelling, and weight gain.
“I was a perfectionist student, and along with the uncertainty of being a musician, I assumed it was just life being difficult”, he recalls.
After graduation, he pursued a master’s in music in Spain. During his first semester, he underwent double jaw surgery, hoping it would help. But back at school, he started experiencing vision problems. Months later, on his first day back in the US, an eye doctor noticed pressure on his optic nerves. An MRI revealed two tumors. He had also grown nearly a decimeter in three years, despite being past puberty. Further tests confirmed acromegaly with extraordinarily high IGF-1 levels.
Darro underwent brain surgery and began monthly treatment, but insurance issues made access difficult.
“Every month was a circus. Half the time, my injection wasn’t there”, he says.
After a year and a half, he switched to daily oral treatment. Despite being easier logistically, it has its limitations. “The food restrictions make it quite difficult to follow. I have changed my eating routines and eat one large meal late in the day. It works if your schedule is consistent, but mine aren’t, and if I go away for a weekend, my schedule’s thrown off completely”, he says.
Today, seven years after his diagnosis, Darro lives in Los Angeles, working as a professional musician. “Acromegaly has permanently changed me but is today an integrated part of my life”, he says.
“Having a chronic illness can make people feel outcasted. Making music about my journey and sharing my story is my way of processing it.”
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.