May is Cystic Fibrosis Awareness Month

May is Cystic Fibrosis Awareness Month

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May is Cystic Fibrosis Awareness Month

In honor of National Cystic Fibrosis Awareness Month, people all across the country will spread awareness about the disease and encourage others to support the mission to find a cure this May.

Approximately 30,000 Americans have cystic fibrosis, a life-threatening genetic disease that affects the lungs and pancreas, and more than 10 million Americans are symptomless carriers of the defective CF gene.

“We have made real progress in the search for a cure, but we still lose precious lives to this disease every day,” said CF Foundation president and CEO, Robert J. Beall, Ph.D.  “That’s why it’s so important for everyone who cares to step forward and join us in the fight against CF this month – and all year round.” 

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure, and funds more CF research than any other organization. Virtually every CF drug available today was made possible because of the Foundation’s support and its ongoing work with researchers and the pharmaceutical industry to find a cure.

What is Cystic Fibrosis?

Cystic fibrosis is a life-threatening genetic disease that primarily affects the lungs and digestive system.  About 1,000 new cases of cystic fibrosis are diagnosed in the U.S. each year.  In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • Clogs the lungs and leads to life-threatening lung infections.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. 

In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF.  Many people with the disease can now expect to live into their 30s, 40s and beyond.

People with CF can have a variety of symptoms, including:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections
  • Wheezing or shortness of breath
  • Poor growth and slow weight gain, in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements

Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments and therapies, along with proper nutrition, can significantly lengthen and improve the quality of life for those with cystic fibrosis.

How You Can Help

  • Volunteer – Contact your local Cystic Fibrosis Foundation chapter to find out the many ways you can volunteer.  Click here to find a chapter near you.
  • Raise Awareness – Learn about cystic fibrosis and spread awareness (social media is a great place to start).
  • Walk – Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event. Each year, more than 125,000 people participate in hundreds of walks across the country to help fight CF.  Great Strides provides a fantastic opportunity for family, friends, students, co-workers and colleagues to come together in support of a worthy cause.
  • Participate in CF Cycle for Life, CF Climb, or Xtreme Hike.  Click here for more information on these events and other ways you can help.

Why Should Those with Cystic Fibrosis Wear a Medical ID?

If you have cystic fibrosisyou should wear a medical ID at all times.  Symptoms of CF can easily be misdiagnosed. Prompt diagnosis is critical to effective treatment.

People with cystic fibrosis can suffer a variety of complications, such as chronic respiratory failure, diabetes, intestinal obstructions, rectal prolapses, diabetes, gallstones, pancreatitis, malnutrition, sinusitis, pneumonia, and many more.   Also, those with cystic fibrosis likely take many medications, which emergency personnel need to be aware of.  If you need medical attention and are unable to speak for yourself in an emergency, a medical ID will alert the emergency medical personnel to your condition.

Some hospitals recommend a necklace rather than bracelet because most of the time quick trips to the emergency room for those with cystic fibrosis are lung related and xrays will need to be taken.  A medical ID necklace would be noticed as it has to be removed for xrays.

 

Source: Cystic Fibrosis Foundation