There was once a time when Jasmeen, an HAEA Regional Youth Leader, was hesitant to become involved with the HAE community. Read about how she confronted her fear of sharing her story and became a leader in the HAEA and HAEi communities.
My journey with Hereditary Angioedema (HAE) started at the young age of nine years old. Unfortunately, I went undiagnosed for nearly five years until my family met an exceptional team of doctors who were finally able to provide some answers, including an accurate diagnosis and a comprehensive treatment plan. I am the only person in my family diagnosed with HAE and this unique circumstance made me feel incredibly isolated throughout my youth.
Luckily, I was introduced to the U.S. Hereditary Angioedema Association (HAEA) not long after my diagnosis. I started following the HAEA Youth Instagram page (@HAEAYouth) and saw a post about the HAEA Social Media Internship. I decided to apply and was accepted into the program which opened many doors for me within the HAEA community and motivated me to start my advocacy journey.
While working as an intern, I was invited to attend the 2019 Atlanta National Patient Summit where I learned more about advocacy, met fellow patients and heard their stories, which was incredibly inspiring. After the Summit, I was able to attend a Capitol Hill event where I had the opportunity to learn a little about legislative advocacy and why it is especially important for the HAE community. While working with the HAEA, I was given many resources not only to advocate for myself but for others around me.
I became involved with Hereditary Angioedema International’s (HAEi) LEAP program (which stands for Learn, Experience, Advocate and Pave the Way), after Lisa Facciola, HAEA’s community engagement specialist, told me about it. Through the HAEi LEAP program, I had the opportunity to travel to Dubai for a two-day training seminar where we completed six courses, which included topics like public speaking and research. After that training we were required to complete 10 weeks of online learning, including how to self-publish online, how to build websites, advocacy writing, story telling, media relations skills and other multimedia skills. One of my favorite activities was interview training where we prepared for public speaking and media interview opportunities.
My involvement with the LEAP program opened my eyes to the disparities in access to proper diagnoses and treatment in the international community. These experiences allowed me to see how advocating for HAE awareness and treatment can help improve access, regardless of location, and help reduce the stigma of rare disease to create a more supportive community for patients and their families and caregivers.
Upon completion of the LEAP program, I worked to develop a new Advocacy Guide for the HAEA Youth community. This guide helps HAEA youth get involved in advocacy initiatives as well as provide a framework for writing letters to elected officials. I think it is so important to give youth the tools and confidence to stand up for themselves and have their voices be heard.
I have now become a Regional Leader for the HAEA Youth so I can help others like me find resources and have easier access to the many programs offered by the HAEA, something I wish I had known about when I was younger. The experiences I have had through my involvement with the HAEA have made me even more confident and comfortable with my diagnosis. I have met so many incredible people in this beautiful community who I consider some of my close friends to this day. I am lucky to have the support from the HAEA and will forever be grateful. It’s hard to imagine that there was a time when I was hesitant to become involved with the HAEA because I was too nervous about sharing my story. I now welcome every opportunity to share my story with others in hopes of providing encouragement and to advocate for change to make a positive impact.
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