I was diagnosed with HAE in 1992, when I was 24 years old, almost by accident, at an emergency walk-in clinic. At first the doctors thought that I had a spider bite on my hand even though they could not find any bite marks. When I returned a month later with the exact same swelling, they ran a blood test which diagnosed me with HAE. At that time, there was little to be done – there was no Internet – difficult to do research on your own. It was virtually impossible to get connected with others with this rare disease. I was very dependent on the local health community doctors, most of whom had never heard of HAE and treated it as regular angioedema.
Over the next 20 years, I suffered hundreds of HAE attacks – my hands, feet, legs, arms, abdomen, and face were swelling. I stopped going to the ER early on, because I was tired of fighting with doctors about what I had and how to treat it. Narcotics do not work on me – my body hyper metabolizes them, so there was no point in going in my mind, even through unbearable frequent intestinal attacks. Several times I was forced to go to the ER – by paramedics, neighbors, or family – mostly just more negative experiences.
When the first real HAE treatment came to market, I was in denial. After all I had been through, some new drug was not going to change anything. I would continue to just muscle through my attacks.
In January of 2013, I had my first throat attack. I held off getting help, but after 18 hours, it started to get serious, and I got scared. This time, the doctors listened, found a pain med that worked, and brought in a viable HAE treatment. I learned that there were four treatment options now! At this time I was re-connected with the HAEA and was connected to Lois Perry, my own personal advocate. I had no idea how important this woman would become to me in the next few months.
A month later – throat swelling again. I called Lois from the ER and she worked with the hospital staff and doctors. My attack was resolved within an hour and I was released. 3 weeks later, I was about to board a plane and my throat started to swell. I called Lois again. I jumped in a cab and spoke with doctors while still in the cab. I was fast tracked at this very busy ER, treated, and released within hours. Unbelievable. Next visit, the pharmacist at the hospital knew who I was and met me in the ER with medicine… before the orders had even been written!
Meanwhile Lois connected me to a local doc well-acquainted with HAE – for the first time in 20 years. She also guided me through the insurance pathways. Most importantly, she took a stand for me, when I was unsure what to do, or if it was worth it. I have not had an attack since my therapy plan started. I have a qualified, very smart doctor who is now directing my care, a hospital 10 minutes away that stocks HAE medicine and they know me. I have Lois, a very strong advocate, that I can reach anytime. Most importantly, I have confidence that I will not be a victim to this disease ever again.
A lot has changed for me in the last few months.