ONCE UPON A GENE - EPISODE 083

 Advocates Come in Small Packages - My Life With Blau Syndrome With Keira Howell

Keira Howell is a twelve year old living with Blau Syndrome joining me to share her story of living with a chronic disease.

EPISODE HIGHLIGHTS

Tell me about yourself.

I'm twelve years old and I have Blau Syndrome. I love to act, sing and do anything related to musical theater. 

Why would you like to tell your story?

I've done presentations at school, but want to expand the people who know my story through the podcast because it's a rare disease and I want to spread awareness.

What is Blau Syndrome and what are the symptoms?

The symptoms that affect me are arthritis, uveitis, rashes and swelling. Blau Syndrome is a whole body inflammatory disease and it can impact major organs like the kidneys, heart and liver and can be life-threatening. Someone with Blau Syndrome can be fine one day and have a flare up the next, so the disease can cause life-threatening problems very quickly.

What's it like as a young person living with Blau Syndrome?

If I'm going on a walk with friends or family, I tend to get sore. Riding a bike and gripping the handle bars, my fingers get very sore. When I play tennis, I have to wear wrist tape. Physical activities are what most affects me. Otherwise, it doesn't affect me physically. No one can tell I'm sick by looking at me.

How does your disease affect you at school?

Before the pandemic, I was leaving school early more than once a week for stomach problems or being sore. I sat out of PE class often.

What strategies help you stay positive?

Whenever I go to an infusion, instead of focusing on the negative, I find a positive-- I love my nurses, they give me candy, there's a vending machine with great snacks, my mom and I go to lunch after and we go get a treat. I always know there's a plus side to infusions or hospital trips.

What have you done with the Cure Blau Syndrome Foundation?

We had an auction a couple months ago to raise money for more testing and find a cure. I  hosted a segment of Ask A Researcher which has interviews with doctors or researchers on community questions. It's exciting to be part of the foundation and I've met a lot of fantastic people.

What do you hope to do with your life as an adult?

I hope I'm cured, spreading awareness, have a good education, a podcast, am an actress and just living life and traveling!

LINKS & RESOURCES MENTIONED

Cure Blau Syndrome Foundation

https://www.curebs.com/

Ask A Researcher on Instagram

https://www.instagram.com/p/B7wloz4lUMA/

Donate to Cure Blau Syndrome Foundation

https://www.curebs.com/donate-1

Seattle Rare Disease Fair Virtual Conference (2021)

http://rarediseasefair.com/?p=164

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