When people receive an HAE diagnosis, they may have a lot of questions they want to discuss with another person living with HAE. Sometimes even people who’ve been living with their HAE diagnosis for years might like to talk with someone who has tried a particular treatment. I’m one of the Patient Mentors for You, Me & HAE, a phone-based mentor program that lets people coping with HAE schedule a call with someone who has experience using FIRAZYR® (icatibant injection) to treat acute HAE attacks in adults 18 years of age and older. Callers I’ve spoken with on a You, Me & HAE calls often ask me about:
- How long it took me to receive an HAE diagnosis
- What HAE symptoms I’ve experienced
- What it’s like to have HAE and treat acute HAE attacks with FIRAZYR
- Whether I was trained to give myself a FIRAZYR injection
[FIRAZYR is the first and only injection you give yourself just under the skin as soon as you recognize symptoms of an acute hereditary angioedema (HAE) attack, after you have been trained by a healthcare professional.]
I feel like when people hear about my “HAE lifestyle” and experiences, they realize there have been times I needed reassurance, support, and even validation. They hear that sometimes all I’ve wanted on my journey with HAE is someone to listen, to hear me.
In my experience, the mentor program often has given the caller the first chance to speak with another person who has HAE. As a mentor, my goal is to always answer each caller’s questions with compassion and reassurance. I enjoy being a Mentor and feeling that I am helping others in the HAE community. I am blessed!
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
What does talking with others about HAE mean to you? Please leave a comment!
Managing HAE differs for everyone. Hear from Shire Ambassadors at an event near you. Click here for more information.