At this year’s HAEA National Summit, we all felt like family

Our family’s first experience at a U.S. Hereditary Angioedema Association (HAEA) conference was amazing!

I must admit that I’m usually a bit wary of large organizations with major sponsorships, just because I’m sometimes skeptical about potential biases. However, I was pleasantly surprised — and thrilled — by my experience at the HAEA National Summit, held July 10-13 in Baltimore. The conference brought together patients, advocates, caregivers, doctors, and drug companies.

I’ll confess that traveling was difficult. For those of us with hereditary angioedema (HAE), stress and vibration can trigger symptom flares. Additionally, both my daughter and I are autistic, and traveling can be overstimulating as well.

It also didn’t help that our departure flight from Denver was scheduled for 7 a.m., which meant an early morning for us. Then it was delayed four times, so by the time we boarded the plane — five hours later — I was beginning to question if the entire effort was worth it.

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We were happy to be visiting Baltimore, the hometown of my husband, Daryl. We were also looking forward to visiting our newlywed son and his wife, as well as seeing Daryl’s aging mother again.

It was my daughter Leah’s first conference experience. She was somewhat apprehensive, but once we recovered from our travel day, everything improved greatly. Leah, 22, loved all the free swag from the vendors. We had so many promotional items we wondered if we’d even have room to pack it all for our return trip home.

From right, columnist Natalie Sirota and her daughter Leah find camaraderie and understanding at this year’s HAEA National Summit in Baltimore. (Courtesy of Natalie Sirota)

She also participated in the HAEA Youth Program and met many other young people living with HAE. She made some great connections and learned even more about being a rare disease advocate.

I think my favorite parts were seeing friends I’ve met over the years in the HAE community and learning new information from all the doctors and professionals in the field of research. There are so many new discoveries about HAE now, specifically involving hereditary angioedema type 3, or HAE with normal C1 levels, which is the form I have.

Daryl benefited from learning more about HAE in the various sessions and gained a better understanding of what Leah and I experience every day with this diagnosis. He also didn’t mind that one of the sponsored hub rooms was a free, all-you-want candy buffet!

There were other ups and downs that go with traveling and living with HAE, such as having to make sure we had refrigerated rescue medication on hand, in addition to our daily preventive medicine. Fortunately, Leah didn’t need to use hers, although abdominal swelling caused me to take a dose of mine.

Following the conference, we spent the weekend visiting family and friends. The flight back to Colorado was seamless, and we were happy to be home again.

From grassroots beginnings to a 1,400-attendee conference this year, HAEA has become a significant part of the rare disease community, not only in research and development, but also advocacy and legislative lobbying. So many people at the HAEA National Summit repeatedly noted that every year seems like a family reunion, and now I feel that, too. I felt seen, heard, supported, and welcomed to be a part of something greater than myself. It was an honor to share in changing the future for those living with this debilitating and life-threatening rare disease.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.