Waterloo woman survives complications of rare disease; fundraiser happening Friday

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WATERLOO, Iowa (KWWL) – Anna Smith is a warrior.  Ask her family and friends, and they’ll tell you why.

Anna is fighting a disease called moyamoya.  UnityPoint Health-Allen in Waterloo tells KWWL moyamoya is a progressive disease that results in the narrowing of carotid arteries at the base of the brain.  Without treatment, it can lead to a complete blockage of these arteries and cause a stroke.

It’s rare.  And so is Anna and her journey fighting moyamoya.  Her battle began in January.

On January 5, 2019, Anna experienced stroke-like symptoms: facial drooping, unable to speak and, when a word was able to be spoken, it was slurred speech.  She also had weakness and tingling in her right hand. She was taken to Allen Hospital where scans confirmed she had a stroke.

“Anna was then transferred to the University of Iowa Hospitals and Clinics where with CT, MRI images and an angiogram confirmed the diagnosis of moyamoya,” said Betsy Smith, Anna’a mom.

In Japanese, moyamoya means “puff of smoke.”  With the disease, the carotid arteries become occluded and the body attempts to compensate by growing tiny vessels that on imaging appear as a puff of smoke.

Anna with Dr. Gary Steinberg of the Stanford Moyamoya Center.

Surgical treatment is the only way to treat moyamoya, which primarily affects children, although it can occur in adults.

Anna and her parents, Justin and Betsy, began researching doctors who specialize in moyamoya treatment and learned about the Stanford Moyamoya Center in California, considered the leading clinic in the country.  And they found Dr. Gary Steinberg.

On March 7th, Anna and her family traveled to California to meet with Dr. Steinberg.  He took some images and the family learned Anna had two strokes in the ten days prior. This confirmed the need to do intracranial direct and indirect bypass surgery on both her left and right side of her brain.  On March 13th, Anna had her first surgery in her left side.

“Surgery went very well but, upon recovery in the ICU, Anna’s blood pressure became unstable and Anna suffered from multiple strokes,” said Betsy.  “She would then spend two weeks in the ICU receiving amazing care, as this young warrior was in a fight to stabilize and have a controlled blood pressure.”

With all of this, Anna’s condition had become even more rare with the finding of her right side progression in the closing of blood vessels in the right side of her brain.

“Never before had the number one moyamoya specialist seen progression this fast,” Betsy said.

Anna and her therapy leads from Santa Clara Valley Medical Center Rehabilitation Center.

After three weeks recovering, Anna received intensive rehabilitation for four weeks at the Santa Clara Valley Medical Center Rehabilitation Center in San Jose and was cleared to have her right side bypass done on May 1.

Anna exiting Stanford Medical Center to be discharged home to Iowa.

“Anna did so well, she was discharged within 48 hours of surgery.  Over the next ten days, she recovered in California with her family and, after 9 weeks, Anna was able to return home to Iowa,” said Betsy.

Anna now is in therapy at Allen.  The goal for this warrior?  To make a full recovery and return to Iowa State University to finish her education.

And speaking of education, Anna and her family want to make sure people are aware of BE FAST.  Every second counts when you experience a stroke, and they want everyone to be aware of the physical symptoms:

Balance – Sudden loss of balance.

Eyes – Sudden loss of vision in one or both eyes.

Face – Does the face look uneven?

Arms – Does one arm drift down?  Ask them to raise both arms.

Speech – Does their speech sound strange?  Ask them to repeat a phrase.

Time – Time is brain.  Every second brain cells die during a stroke.

On Friday, May 31 from 7 p.m. until midnight, the community is invited to come out and meet Anna the Warrior at The Hippodrome in Waterloo.  For just $10, the evening will include a DJ, bands including Brian Herrin and Boogie RX, a photo booth and food.  Plus, you’ll have a chance to Dunk the Doctors and bid on over 100 items at the silent auction.  Kids 12 and under get in free.

Visit the event Facebook page: https://www.facebook.com/events/286562342238922/

KWWL wishes Anna the very best in her continued recovery.

“With Anna’s continued successful recovery, she is told she will go on to live a full, healthy life.” – Anna’s mom

 

Abby Turpin

Abby Turpin

Evening Anchor - KWWL News at 5, 6 and 10
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