From Ianice Viel, Communications & Digital Manager, US HAEA

Youth Advocacy Month (US HAEA & HAEi Youngsters): October was HAE Youth Advocacy Month, and we invited all HAEA Youth members and HAEi Youngsters to help raise awareness by wearing blue for #BeyondHAE! This year, we made it easier than ever to participate. We invited community members of all ages to post a photo or video of yourself wearing blue. 

HAEA Community Blog: Providing HAEA friends with an opportunity to share experiences, reflections, and perspectives is an important part of our core values. The HAEA Community Blog is a platform that allows people with HAE to share their unique stories on a wide variety of topics ranging from emotional health to treatment.

Featured Blog Articles

“The HAEA Youth Leadership Council was instrumental in my experience of growing up with HAE. I never had to question if I had someone in my life that could understand what I was going through. Being a part of the HAEA allowed me to immediately bond over shared experiences with others who are living with HAE.” 

– Kobe W. 

>> Read I Found My Voice Through My Community

“There are going to be dark days. You may miss a holiday or an event you were looking forward to, but you will absolutely have more good days than bad. It’s easy to remember the bad days. It’s easy to use your illness as an excuse for not meeting your goals. But do your best to change that thinking.” 

– Derek J. 

>> Read It Can’t Rain All the Time: My Experience with HAE and Mental Health

HAEA Round Table: Because HAE is so rare, people can feel isolated when dealing with the everyday challenges of learning how to live with this chronic illness. When we come together as a community and talk about our struggles, however, we realize that we are not alone in our efforts to live a normal life. That is why we have developed the HAE Round Table. This platform connects members of our community with their peers on the issues that currently affect them, including: 

  • How do you explain your HAE diagnosis to others? 
  • How do you overcome a fear of needles?
  • How did you go about obtaining medicare with your HAE diagnosis?
  • How does HAE affect aging?  

The HAEA Round Table will be posted every other month on our official Facebook page Live.

>> Access the Round Table recordings