When I was finally diagnosed, I felt countless emotions rush through my body:
- Elation that the years of searching and not knowing what was wrong with me were over
- Relief that there were treatment options available
- Affirmation that the symptoms were real, and not just in my imagination
For six years, I had suffered with pain and the fear of not knowing what was wrong with me, and I believed that this diagnosis was finally a turning point.
My family and I were finally given an answer, but the answer was so foreign to us. Hereditary angioedema? What was that? We had never heard of it and certainly never met someone with this illness. We longed for a role model who could give us some advice and maybe even connect us to a community.
I wanted to talk with someone who had gone through the same journey I was going through. I was excited, scared, and wanted nothing more than to ask questions of someone who had HAE, too.
But several years passed before I was able to find that someone, which I did the first time I attended a patient program.
It was a turning point for me.
For the first time, I was able to speak with another person who, like me, was diagnosed with HAE. We shared stories, asked questions, and offered words of encouragement to one another. Having a community to lean on is so important, and I don’t think anyone should have to face this illness alone!
Today, people living with HAE have the advantage of more programs, like the You, Me, and HAE Mentor Program, and I encourage everyone to take advantage of those types of opportunities. It can be nerve-racking to reach out, and I remember being quite apprehensive when I first did. But we are all in this together. We are a team and a community. Everyone deserves support!
Register for a You, Me & HAE Mentor call at www.firazyr.com/event; or by phone: 1-866-888-0660, Monday–Friday, 8:30 A.M-8:00 P.M. ET.
Have you ever participated in a Mentor call? Leave a comment!
The journey with HAE differs for everyone. Hear from Shire Patient Ambassadors at an event near you. Click here for more information.