Voices for change in a village of rare disease advocates, part 2

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

The road to advocacy rarely looks the same twice. For some, it begins with a diagnosis. For others, it starts long before — with observation, with love, with unanswered questions. But no matter where the journey begins, each person who steps forward brings something uniquely valuable to the rare disease community. Now more than ever, we need every voice.

In part one of this series, we met Sheena Standingbear, a mother whose diagnosis of hereditary angioedema (HAE) ignited a fierce spirit of advocacy. Now, in part two, we shift focus to her daughter, Arabel.

Arabel’s path didn’t begin with her own symptoms; it began by watching her mother fight. Now living with HAE herself, Arabel is carving out a voice all her own, reminding us how powerful it is when advocacy becomes a family legacy. She and I shared documents by email to conduct this interview, presented here with light editing.

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HA: You started advocating as a teenager. What inspired you to get involved so early?

AS: Before I was diagnosed, I was already a part of the HAE community. When I was growing up, my mother struggled with HAE and not having been diagnosed for a long time. As soon as she was diagnosed, she began her advocacy journey for others out there who may be facing similar problems. I got to be included in this advocacy, and HAE has always been a big part of my life even before I was experiencing symptoms.

After I was diagnosed, I began advocacy as a patient, which was a little different from my previous perspective. I’d learned to use my experiences to elevate my advocacy and share what having HAE is like with anyone who will listen.

How has your approach to advocacy changed from your younger years to now as an adult?

My approach to advocacy has changed a lot over the years; it changes from person to person, even. I feel like a lot of advocacy is being aware of your audience and being able to shift your approach. I began small and at a younger age, just telling the people around me about my mom and her story. Then it shifted to telling my story, and it’s just a little bit different.

I think my approach is more goal-oriented now. I have wants for where I want my advocacy to go. I have specific people I want to talk to because I know the impacts they can have on our future. I have, since the beginning of my advocacy, learned how to use my voice to make differences.

What changes have you seen in HAE awareness, treatment, and community support since you first started advocating?

HAE treatment has made so many advances. So many medications are currently in trial or in search of approval, variations of our original medications have come out, cost has been reduced by a small margin because of that, and it’s clear that lives have gotten easier.

I think the community has always been strong, but I feel like I got to watch it grow, and a small part of me wants to take a little credit because I, along with so many others, have helped countless people along their own HAE journey.

What’s a moment in your advocacy journey that’s had a lasting impact on you?

Arabel Standingbear in front of the Capitol in Washington this year as part of Rare Disease Week. (Courtesy of Sheena Standingbear)

It was during Rare Disease Week on Capitol Hill. It wasn’t the outcome of our actions or the actual speaking event; it was when I was surrounded by nearly a thousand people who’d traveled from all over the U.S. to work toward a few common goals.

Moments like that remind us of the strength in numbers. Advocacy can be isolating, but it doesn’t have to be.

Do you feel advocacy is different for younger versus older generations of HAE patients?

When I was younger, I was more focused on me and those around me. Now that I’m older, I’m more focused on the “we” and the “us” far and wide.

If you could give advice to young people with HAE who want to advocate, what would it be?

Even if you feel like you’re talking to a wall a lot of the time, changes are made every day. There are so many people in our community who know the facts. Focus on your story and what HAE has meant for you, because that is your unique experience with HAE, and advocacy is easy when you’re speaking from experience. You know you best.

***

Witnessing her mother’s strength in the face of uncertainty lit a spark in Arabel before she even knew she’d walk a similar path herself. Learning how to help your voice evolve is a vital part of effective advocacy, which Arabel does with intention.

Advocacy, especially in healthcare, is often a series of doors — some opening, many slamming shut. It’s resilience that keeps advocates moving forward. Advancements and change don’t just happen; they’re driven by tireless voices like Arabel’s.

When people share their stories, they don’t just speak for themselves; they create space for others to feel seen, understood, and called into action. There’s so much power in sharing our personal experiences to drive collective change.

In part three, we’ll meet Janet, Sheena’s wife, who married into this journey but dived in headfirst, adding another layer to this family’s HAE experience.

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.