Voices for change in a village of rare disease advocates, part 1

This column is the first in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey.

In today’s healthcare environment, advocacy has never been more critical. While politics often complicate conversations around healthcare, one truth remains: People living with rare and chronic illnesses deserve better — better awareness, better support, and better access to lifesaving treatments.

Advocacy plays a vital role in the rare disease community; it shapes policy, drives research, and empowers patients and caregivers alike. But beyond the science and systems are the people: real, raw, and resilient. We show up, we speak out, and we turn our hardest days into something bigger than ourselves. As both a patient and advocate, I believe it’s essential to lift these voices and stories that fuel change.

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Sheena Standingbear was diagnosed with HAE in 2019. (Courtesy of Sheena Standingbear)

Sheena Standingbear, a mother living with hereditary angioedema (HAE), is a passionate advocate for others living with the disease. Her journey into advocacy has been shaped by urgency, resilience, and love — not only for herself but for her daughter, Arabel.

Her story offers a glimpse into the challenges, triumphs, and relentless hope that fuel the rare disease community’s push for change. She and I exchanged documents by email to conduct this interview.

HA: When did you first start advocating for hereditary angioedema, and what motivated you to get involved?

SS: You could say I started advocating for hereditary angioedema the month after I learned what HAE was in 2019. That’s also the point in my life I was officially diagnosed, even though I’d experienced swells my entire life and was born in 1982. It took me a month to dry my tears and put myself back together. …

It [her heightened motivation to advocacy] was shortly after she [her daughter] too experienced a storm of swells and attacks … causing her to get officially diagnosed, too. … I couldn’t watch her do all the swelling in life that I’ve done. I’ve missed out and hid my illness, not understanding what was going on with me.

How has your advocacy work evolved over the years?

My advocacy has evolved over the years. … First, I learned and listened. Then I attended events and better learned how to advocate the best way for me. Next, I just dove in with both hands and feet, even brought the family along to advocate, too. Together, we can be powerful and educate many people. Together we can!

What changes have you seen in awareness, treatment options, and support for HAE since you began advocating?

I’ve seen lots of changes and so much progress in the way of HAE support, meds, and people wanting to make a difference in the community, from doctors, patient advocates, and even family members. … I find I’ve changed from hiding an ugly illness to be that person that turns it into an educational experience for someone else.

Have you faced any challenges in your advocacy efforts? How did you overcome them?

The biggest challenge I face in my advocacy efforts is traveling versus intestinal swelling. Swelling randomly inside or outside of my body isn’t super controlled, even with our preventive and acute meds. Traveling with swells when advocating can be difficult, and stress is a trigger for swells. Almost anything can cause stress, good and bad. Oh how I love to try and travel! I choose to do all I can in life, and don’t leave home without my medication.

One airway swell without medication available could mean a fatality in the HAE community. …

I’m going attack-free for longer periods, starting to travel and advocate even more. I feel in-person advocacy is just as important as social media advocacy and all other forms.

What has been the most memorable or pivotal moment in your advocacy journey?

It feels like every single moment in my advocacy journey has been pivotal, from online, to in person, or on Capitol Hill in Washington, D.C. It makes a difference, and it truly has an impact. Advocating matters!

Sheena Standingbear, left, smiles with her daughter, Arabel. (Courtesy of Sheena Standingbear)

What advice would you give to parents who have children with HAE and want to get involved in advocacy?

I would tell all parents who have children with HAE who want to get involved in advocacy to bring your “If you see something, say something” attitude. Start looking for HAE events, meetups from other people posting online with HAE. Google the words and reach out and say that you want to be a part of what they’re doing.

Search, talk to people, and get involved. There’s so many different ways one could get involved with advocacy and on so many different levels.

***

Sheena’s story reminds us that advocacy often begins with personal hardship. But with strength and intention, it can spark real change. Her commitment is not only to her own health, but also to creating a better future for her daughter and the broader HAE community.

For those interested in advocacy but uncertain where to begin, the U.S. Hereditary Angioedema Association and its advocacy program offer an excellent starting point and valuable support.

In part two, we’ll meet Arabel Standingbear, Sheena’s daughter, whose young voice and experience add a vital perspective to the fight for better care and understanding.

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.