My First-Time Experience at the 2023 US HAEA National Summit

October 1st 2023 | 5 minute read
Sheena Standingbear
After four long years, members of the HAEA community gathered in Orlando, Florida for the 2023 US HAEA National Summit! Read fellow HAEA community member, Sheena, describe her and her family's first-time experience at the Summit!
I was diagnosed with this rare disease when I was in my thirties. I used to hide my illness as best I could as it never went well when others saw me in attack mode. My daughter also started to show signs of the illness when she was younger, but was officially addressed and treated once she reached puberty, as estrogen is a trigger for swelling attacks in women and young ladies. A couple years back, she had quite the storm of attacks. She’s sixteen now and has been officially diagnosed as well with HAE with Normal C1-Inhibitor. Thankfully, we were able to get her on both a preventative and cute medication to effectively treat her HAE. However, my other child, a boy who’s turning eighteen, hasn’t shown any signs at all. This really shows the 50/50 genetic chance of passing this hereditary disease onto your children.

My first US HAEA National Summit was so impactful! The information we obtained at the Summit in Orlando, Florida was powerful. I thought I was current or up to date with all things HAE, but what I learned from gathering in the conference room and exhibits in the hallways of the hotel filled my heart and my mind. There was so much to take in and get to be a part of. Because of the robust agenda, there was no way we could have done all that was scheduled for the Summit, but we did as much as we could, loving every minute of it!

The theme of the summit fit perfectly being it was “Living Beyond Boundaries.” For it to be my family's first time to ever gather with other diagnosed HAE patients, we couldn’t have asked for a better time. So much great information was learned, hands on stuff to do, great food, activities for the youth, a walk to celebrate, and did I mention all the totally amazing people just like me and my daughter with HAE! It was truly such a great experience and we are already looking forward to the next one.
I am thankful that my daughter will never have to experience the life many of us have had to live with hereditary angioedema. Our children and those diagnosed have so much knowledge now that it’s truly powerful. The HAEA is a huge part of all the knowledge being out there and available. We all get to be advocates and celebrate advocating with others and for ourselves. Some of us wear both the caregiver AND the patient title, just like I do. Thankfully my daughter isn’t scared of needles and self-injects all her medications, and even helps to inject my rescue medications. My spouse is also an amazing caregiver and helps with injections for myself, when needed. We’ve all gotten to help many in their journeys of learning about HAE in so many ways.

It’s almost ironic that my daughter had a lip swell during our stay, but we were able to treat on the go and move forward with our Summit activities! There were many people and youth members that we met there, we didn’t feel alone. We both felt so supported! The adults were all checking in with the other adults with HAE, and the kids were doing the same thing. Caregivers, those diagnosed, doctors, and all kinds of medical professionals and people who are part of the HAE support system were there to celebrate our rare disease.
What an experience we had. If you haven’t attended one before, my family and I highly encourage you to contact the HAEA and see what you can do to attend the next one! If you’ve attended this one or a previous summit, you truly feel like one big family, as everyone was so caring and understanding there. What an event it all was and truly we are Living Beyond Boundaries!
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