Ask the Doctor: Rett Syndrome - KTVN Channel 2 - Reno Tahoe Sparks News, Weather, Video

Ask the Doctor: Rett Syndrome

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Rett Syndrome is a severe neurological disorder that affects only females. It robs a normal functioning toddler of her abilities to speak, use her hands, and communicate.
Dr. Debra Hendrickson is a pediatrician with Northern Nevada Pediatrics. If you have a question for her, call 858-2222 between 5 p.m. and 6 p.m. tonight.

Rett Syndrome (RTT) is a severe neurological disorder that affects only females and occurs in 1 in 10,000 live female births. RTT robs a normal functioning toddler of her abilities to speak, use her hands, and communicate. This leaves the affected girl severely disabled within months of onset.

RTT is severely underdiagnosed; the girls are commonly misdiagnosed with Autism or Cerebral Palsy. Some estimates place under-diagnosis at 50%. Northern Nevada has 5 girls and women with RTT: Reno/Sparks - 3, Lovelock - 1, Carson - 1. By calculations performed on the last census data, Northern Nevada should have at least 10 girls or women diagnosed.  Awareness is desperately needed in Northern Nevada.

Human drug trials of IGF-1 (a growth hormone) have shown promising results in treating RTT. Phase 2 of the IGF-1 study (out of Boston Children's Hospital) will complete in 2015. The drug study accepts only 30 girls nationwide (including Canada). Nevada has 3 participants which represents 10% of study participants; 2 of the participants live in the Reno/Sparks area.

The local RTT families in Reno desire to make the community aware of RTT in order to stimulate accurate diagnosis, raise funds, and educate the public in general. We would love to participate in an interview and introduce a few girls to the media.

Contact:
Brenda Turley, Reno area Rettsyndrome.org representative
breart@sbcglobal.net
775-830-3556
www.strollathon.org/reno
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