Letter: Jackson Resident Becomes HAE Ambassador
I live with a rare disease called hereditary angioedema (HAE) that causes painful, unpredictable and potentially life-threatening swelling attacks throughout my body. HAE has always been a big part of my life, but I no longer let it dominate me. I focus on what I can do rather than what I cannot do.
Living with HAE can be scary, frustrating and isolating. While I’m one of the estimated 25-30 million Americans who live with a rare disease, according to the U.S. Hereditary Angioedema Association (US HAEA), I’m only one of about 10 people known to be diagnosed with HAE in Ocean County. I want to share my story to reach others in our community who may not yet be diagnosed with HAE or who may struggle with the condition. You are not alone in your fight and there are people who can help.
The hardest part of my journey has definitely been growing up with HAE. I didn’t really understand what it was or how serious it could be. All I knew was that it meant my body would swell. I felt like I was turning into a monster whenever I had an attack. My face would swell to the point where I was unrecognizable, and I didn’t think it would ever get back to its normal size. If my face or extremities swelled, I wouldn’t go to school. I wouldn’t go back until they returned to normal, so I was absent a lot.
Even though my family was great, I did miss out on a lot of functions. Holidays and weekends were a blast at my house. We always had family and friends over, but if I had an attack, I’d go hide in my room. I just didn’t think people would understand. As bad as the swelling of my face and extremities were, they were nothing compared to the excruciating pain caused by abdominal attacks. Those were the worst. I couldn’t do anything but lay in pain until the attack subsided.
I never gave up searching for a way to help me better manage my HAE attacks. Today, we have treatment options and a supportive community of physicians, advocates and people living with HAE.
That’s why, when I learned that Shire, a pharmaceutical company focused on rare diseases like HAE, started an Ambassador program for people like me to share their stories with communities across the country, I jumped at the chance to participate. I now travel across the United States to speak with groups about my experience so that others with HAE—or people yet to be diagnosed—realize that together, we can ensure no one feels alone in their fight against this rare disease. If you want to learn more about a patient advocacy group that offers education and more, visit the US HAEA at www.haea.org
Shire Patient Ambassador