Local MD gives hope for rare disease cure
LOS ANGELES (KABC) -- First a young woman is told she has a rare disease that will eventually disable her. Then, she's told there's no cure or even a hope for one.
But with the help of a local doctor, she's trying to find a solution for herself and others like her.
For the past 10 years Kam Redlawsk has been struggling to keep her ability to walk, but her muscles won't listen. The trouble started when she was 19 years old.
"I was tripping more, my feet were dragging and I couldn't do the running as much so I thought there was problem," said Kam.
It kept getting worse. Kam's condition stumped several different doctors.
"I had to take a lot of medications and it was all for the wrong diagnosis," said Kam.
Three years ago Mayo Clinic experts diagnosed her with a rare muscle-wasting disease called HIBM, Hereditary Inclusion Body Myopathy. It can lead to severe disability within 20 to 30 years.
"A lot of doctors were telling me that you know there was no hope and you should quit college and kind of lead a less ambitious life," said Kam.
Kam didn't think she would be able to pursue her career as an automotive and product designer until she met Dr. Babak Darvish. He and his brother both have HIBM. Despite their physical limitations they're dedicated to stopping the disease.
So far, they've isolated the genetic mutation and the enzyme it affects.
"Enzymatic disorders historically have been more treatable and so that's why it's so exciting," said Dr. Darvish.
Dr. Darvish co-founded Advancement of Research for Myopathies, or ARM. What ARM needs is a helping hand.
"Time is the enemy and you know what our limitation is primarily biomedical research funding. The more funding available the more we will be able to do," said Dr. Darvish.
Kam contributes to this cause with her creative talents. When she's not designing toys for Mattel, she designs brochures and pamphlets for ARM. Physical therapy and working to help others with HIBM keeps Kam going.
"I believe that you should use what you have or your experiences, if it can benefit someone then why not," said Kam.
HIBM has been identified in people of Asian, European, South American, African, and Middle Eastern origins.
healthy living, denise dador
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