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

Eighteen-year-old Shira Strongin remembers when one other scholar referred to as her a “sick chick.”

Not in the best way that meant “cool” or “good,” she recalled, however in method that was derogatory towards the undiagnosed progressive neurovascular illness she lives with.

Strongin, a Corona del Mar native, was in center faculty on 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 stated. “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 by no means noticed have been the seizure-like episodes the teenager was experiencing.

But Strongin quickly took the “sick chick” label and used it as her model when she created an on-line group for younger women with rare diseases and disabilities worldwide.

Strongin started writing a blog beneath the pen identify “Sick Chick” round 2011. It was because the social media craze started to growth, however Strongin’s website was gaining traction by phrase of mouth and getting shared in Yahoo teams.

After her work was found by a pediatric nonprofit on the East Coast, she started to write down for them and converse at nationwide conferences.

As extra individuals discovered of Strongin and her blog, she was capable of broaden it into a much bigger website that caters to a world group and showcases tales of people dealing with numerous circumstances head-on.

Some narratives on share the moments through which individuals first came upon they have been sick, when unusual signs arose after athletic accidents or when frequent fevers signaled one thing extra happening.

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

Through Sick Chicks, younger women with circumstances akin to cystic fibrosis and cerebral palsy have been capable of type bonds with one another, a connection Strongin calls “the sisterhood” on the web site.

The website additionally options health and social causes individuals can become involved with and lists occasions the place fellow sick chicks can meet up.

“Shira touched my life through personal, face-to-face compassion,” Santa Ana resident Emily Knapp, who discovered the blog via a pal, stated by way of e-mail. “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 spot the place Strongin can share her personal ideas on women’s healthcare rights, physique positivity and discovering a university that matches greatest with sure health circumstances.

“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,” stated Strongin, who started her first yr of school at George Washington University in Washington, D.C., final month.

It was her expertise filling out school purposes that impressed her to work on the subsequent 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 stated. “That’s something that other girls will need to face if they want to go off to school.”

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

In June, 15 youngsters nationwide have been introduced as award recipients. The awards acknowledge work devoted 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, stated in an emailed assertion. “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 additionally plans to make use of the Tikkun Olam Award funds to assist make Sick Chicks an official 501(c)three group. The nonprofit standing will permit Sick Chicks to simply accept sponsorships, donations and start fundraising for the scholarship program.

Sick Chicks has reached about 2,500 people throughout the globe, in accordance with the final time Strongin checked the location’s community.

“It’s amazing what Shira has accomplished with how truly sick she has been,” Strongin’s mom, Barbara Granoff, stated. “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 stated. “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 might embrace understanding which buildings are wheelchair accessible or avoiding sure locations if one is delicate to specific sounds or lights, such because the time certainly one of Strongin’s school associates informed her to remain away from an on-campus get together as a result of the flashing lights might have triggered a seizure, Strongin stated.

“I told her, ‘Thanks for letting me know ahead of time,’ ” stated 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.”

Twitter: @AlexandraChan10

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