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Research, Advocacy, Compassion, Empowerment
Research, Advocacy, Compassion, EmpowermentPatient Stories
Latest Stories
Roberto's Story
My name is Roberto. I live in Texas. I was diagnosed with Hereditary Angioedema when I was 8 years old.
When I was 6, I was getting frequent attacks and doctors would just say it was allergies. They also thought my swelling was a side effect of my heart surgery three years before, but everything the doctors tried failed or made my swelling worse. I would swell up everywhere and almost for every little reason. I played football, but it soon became harder for me to play.
When I turned 8, I had an attack that almost collapsed my esophagus which would have made it impossible for me to breathe. While other doctors were certain I was an abused child, a young doctor read my medical records and researched my symptoms. He finally came to us saying he thought I might have Hereditary Angioedema. After a few tests, we knew it was true. I had a diagnosis, but no one knew what to do or how to treat HAE. And then they began to doubt someone so young could have HAE, so they released me from the hospital.
A week after I was released, another doctor said he could help me. He was an allergist who had two other patients with HAE and he gave me a medication approved for my symptoms. Then my mother was tested and found out that her frequent attacks of abdominal pain were also due to Hereditary Angioedema. As I grew older, I was picked on or left behind by athletic teams because they just thought I was weak. Before I discovered the HAEA website, I thought I was alone.
Medication has helped me. I am now 18 years old and I have been able to play football as a starting tackle and join a marching band as a percussionist. I am a part of the Sandra Day O’Connor Criminal Justice Academy, Law Enforcement Skills USA, and am now the Sergeant Major of my school’s JROTC program. My name is Roberto and my mother and I are not alone anymore in having Hereditary Angioedema.
