New Tuberous Sclerosis Study: Drug Can Shrink Tumors and Save Kidneys - Cincinnati Children's Blog

New Tuberous Sclerosis Study: Drug Can Shrink Tumors and Save Kidneys

“I’m active.  I feel better.  I’m happy to be alive.”  These are words from Misty Barnhart, a patient of the Tuberous Sclerosis Clinic at Cincinnati Children’s.

Before coming to Cincinnati Children’s, Misty had one of her kidneys removed after a procedure to resect masses within the kidney didn’t leave much functioning organ. Later, she was told she would need the same surgery to remove tumors from her one remaining kidney. “At that point, I was just hysterical,” she said. Before she said yes to a surgery that could leave her without any kidney function, Misty researched other options. In that research, she found Dr. John Bissler and Cincinnati Children’s.

Misty is one of about a million people worldwide living with tuberous sclerosis complex (TSC). It’s a genetic disease that causes tumors to grow on vital organs like the heart, lungs, kidneys and brain. The tumors are non-malignant, but can interfere with normal organ function.

“I can’t tell you how many times I’ve heard from patients who say their doctors told them a kidney looks bad, is full of tumors, isn’t working and has to come out,” says Dr. Bissler, who co-directs the Tuberous Sclerosis Clinic. “But you can do studies on these patients and find out that they have normal kidney function. The kidney looks bad, but it works.”

When Misty came to Cincinnati Children’s, she was enrolled in a study led by Dr. Bissler involving a drug that is now shown to shrink and successfully limit growth of tumors related to TSC. We think you’ll enjoy meeting Misty in the video below and hearing how her life has transformed.  “I call it my miracle,” says Misty.

http://www.youtube.com/v/5SsLBGecyuo?hl=en_US&version=3

Dr. Bissler’s study was just published in The Lancet and a news release detailing the findings is available in our Newsroom.

The Tuberous Sclerosis Clinic at Cincinnati Children’s is the world’s largest such center dedicated to identifying and treating this disorder.

Read more about the study in U.S. News & World Report.

 

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Cincinnati Children’s News Team

About the Author:

The members of the news team at Cincinnati Children's are responsible for telling the stories of the medical center. Stories of the families we serve, research and clinical care, safe and healthy practices and happenings at the hospital. If it has to do with Cincinnati Children's, Danielle, Nick, Jim, Kate, Rachel, Terry and Shannon will keep you informed.

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Comments

  1. Melissa Kenyon January 11, 03:27
    Always good to see more from this amazing physician and CCHMC Thank you for such incredible work and a wonderful team!
  2. Nicole Taksar January 11, 10:58
    Thank you, for a wonderful team and thank you for saving my life. Nicole
  3. sue cabossart January 13, 00:58
    misty is my nices this is my brothers daughter
  4. pushkar sharma November 01, 15:12
    sir My son has tuberous sclerous age8 years.my son three tumor brain treatment all over india nurology doctors consult but epilepsy and beha ior no control.sir please suggest best treatment and cure my son best treatment my son please help my son .
    • Kate Setter
      Kate Setter November 01, 15:16
      Hello Pushkar - Please email our Tuberous Sclerosis clinic with your questions at tsclinic@cchmc.org.
  5. […] Here’s an article about some of the miracles Dr. Bissler’s work have led to… […]