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HEALTHWATCH: Cystic Fibrosis
30,000 Americans are living with cystic fibrosis according to the Centers for Disease Control.
Cystic Fibrosis is a chronic, progressive, and frequently fatal genetic disease of the body's mucus glands.
It primarily effects respiratory and digestive systems.
Sacred Heart Hospital treats more than 100-patients with the disease and just became an accredited facility.
Channel 3's Amber Southard explains what that may mean for patients
"Currently there is no cure for cystic fibrosis. But, just a few weeks ago Sacred Heart Nemours Children's Clinic was accredited. Meaning patients will now have access to new research."
Ten year old Rebekah Nelson was diagnosed with cystic fibrosis when she was three years old.
She had a chronic cough and felt fatigued. Her mother said doctors were stumped as to what could be wrong.
"I can't really run as fast or I'll have to take breaks and that's fine. I'm just like hold on for a second, so it just slows me down a little bit," said Rebekah Nelson.
They eventually gave her a sweat chloride test.
People with CF have high salt content in their sweat.
"The sweat chloride test is just simply a disk and they tape it on the skin and you go for an hour or so and collects the sweat," said Joann Nelson.
After the test Rebekah was quickly diagnosed and now visits Sacred Heart once every three months.
CF is currently untreatable. Median life expectancy is age 36.
"That number will never come out of my mouth. I will never restrict her to this is the cap and this is it and we never have. We don't treat her like she's so fragile she's not going to be here next year," said Joann Nelson.
At 10 years old Rebekah knows her condition but, says she has a lot to be thankful for..
"I have my family and they're really supportive and if I'm like hurt or something then they will take care and make sure I'm okay and it's just really nice to have them," said Rebekah Nelson.
The director of the Cystic Fibrosis Center at Nemours says over the past few years new medication has become available.
Becoming an accredited facility Sacred Heart will now be able to serve CF patients all over the south east and offer access to new medications.
"In the near future a cure will be found I totally believe that," said Dr. Okan Eildemir.
Dr. Eidemir says he now has a new mission..
"Lung transplantation outcomes are not very good especially with kids with cystic fibrosis. My new mission is to make sure no child needs a lung transplant with cystic fibrosis," said Dr. Okan Eildemir.
Rebekah and her mother have a message for those sharing their same experience.
"Absolutely keep pressing forward," said Joann Nelson.
Most states now have a state screening to check children for CF before they experience any symptoms. If you think your child might have cystic fibrosis you should contact your physician.
With your Health Watch report Amber Southard Channel 3 News.
For more health related news head over to weartv.com and click on the Health tab.