Corona del Mar teen’s blog for ‘sick chicks’ with rare diseases and disabilities flourishes

Eighteen-year-old Shira Strongin remembers when another student called her a “sick chick.”

Not in the way that meant “cool” or “good,” she recalled, but in way that was derogatory toward the undiagnosed progressive neurovascular disease she lives with.

Strongin, a Corona del Mar native, was in middle school at the time.

“I had been in and out of hospitals and I had a lot of problems in middle school with bullying because kids wouldn’t understand why I’d miss school and show up the next day in a wheelchair,” Strongin said. “It was hard to explain to them. But how can you expect 11- and 12-year-olds to understand something that even medical professionals don’t understand yet?”

All her classmates knew was that she was in a wheelchair. What they never saw were the seizure-like episodes the teen was experiencing.

But Strongin soon took the “sick chick” label and used it as her brand when she created an online community for young women with rare diseases and disabilities worldwide.

Strongin began writing a blog under the pen name “Sick Chick” around 2011. It was as the social media craze began to boom, but Strongin’s site was gaining traction by word of mouth and getting shared in Yahoo groups.

After her work was discovered by a pediatric nonprofit on the East Coast, she began to write for them and speak at national conferences.

As more people learned of Strongin and her blog, she was able to expand it into a bigger site that caters to an international community and showcases stories of individuals facing various conditions head-on.

Some narratives on thesickchicks.com share the moments in which people first found out they were sick, when strange symptoms arose after athletic injuries or when frequent fevers signaled something more going on.

Others ask questions that pop into their heads when spending time with friends: “Where would we eat?” “Would the smell trigger a migraine?” “How many stairs can I walk up without getting a headache?”

Through Sick Chicks, young women with conditions such as cystic fibrosis and cerebral palsy have been able to form bonds with each other, a connection Strongin calls “the sisterhood” on the website.

The site also features health and social causes people can get involved with and lists events where fellow sick chicks can meet up.

“Shira touched my life through personal, face-to-face compassion,” Santa Ana resident Emily Knapp, who found the blog through a friend, said via email. “She showed me understanding even when I lost control over my motor and vocal behaviors: my slurring, stuttering, involuntary vocalizations … . Her message brought me confidence and shrunk my shame and embarrassment.”

It’s a place where Strongin can share her own thoughts on women’s healthcare rights, body positivity and finding a college that fits best with certain health conditions.

“It brings an opportunity to raise awareness, to talk about accessibility and to show people how they can take the time to understand something they wouldn’t normally experience in everyday life,” said Strongin, who began her first year of college at George Washington University in Washington, D.C., last month.

It was her experience filling out college applications that inspired her to work on the next Sick Chicks program — a scholarship fund.

“When I was looking, I wasn’t eligible for athletic scholarships, and merit scholarships are hard to come by, and I pay out of pocket for medication,” Strongin said. “That’s something that other girls will need to face if they want to go off to school.”

A recent recipient of the 2017 Diller Teen Tikkun Olam Awards, Strongin plans to use the $36,000 from the award to start funding the scholarship program.

In June, 15 teenagers nationwide were announced as award recipients. The awards recognize work dedicated to social good and volunteer service.

“The Tikkun Olam Award recipients never cease to amaze and inspire us,” Jackie Safier, president of the Helen Diller Family Foundation, said in an emailed statement. “Each embodies the mission of ‘tikkun olam,’ to repair the world, in all facets of their work. These teens remind us that no matter the age, an individual can make a difference and impact the world in a positive way.”

Strongin also plans to use the Tikkun Olam Award funds to help make Sick Chicks an official 501(c)3 organization. The nonprofit status will allow Sick Chicks to accept sponsorships, donations and begin fundraising for the scholarship program.

Sick Chicks has reached about 2,500 individuals across the globe, according to the last time Strongin checked the site’s network.

“It’s amazing what Shira has accomplished with how truly sick she has been,” Strongin’s mother, Barbara Granoff, said. “It would’ve been so easy to be in the mindset of ‘poor me,’ but rather than be bitter she turned it around and made something incredibly positive, give back to her community and found her voice. She’s my role model, too.”

“It can be so isolating when you have a rare disease and you have nobody to relate to,” Strongin said. “But something to be aware of when talking to somebody who is sick is to know how to make them feel included and there are ways to do it.”

This could include knowing which buildings are wheelchair accessible or avoiding certain places if one is sensitive to particular sounds or lights, such as the time one of Strongin’s college friends told her to stay clear of an on-campus party because the flashing lights could have triggered a seizure, Strongin said.

“I told her, ‘Thanks for letting me know ahead of time,’ ” said Strongin. “I personally prefer that people ask me questions and talk with me because illness and disability can be invisible. I could have had two transfusions of blood the other day but now here I am looking normal, and that doesn’t take away from being sick.”

Alexandra.Chan@latimes.com

Twitter: @AlexandraChan10