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May is National Cystic Fibrosis Month


Did you know that May is National Cystic Fibrosis month? Cystic Fibrosis has devastating effects on those inflicted with the illness. If you don't know of anyone personally with CF, you can read about its effects in Dear Nobody: The True Diary of Mary Rose, but I warn you. It's heartbreaking.


 





Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis:
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/weight gain in spite of a good appetite;
  • frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the early 40s.
Tips for Optimal Health:
·         Avoid the spread of germs
·         Watch your diet – high calorie and high fat diet for those with CF is essential
·         Take pancreatic enzyme supplements in addition to vitamin supplements
·         Keep sugar in check
·         Take care of your lung health by performing lung exercises

Resources for Patients with Cystic Fibrosis
  • CF Patient Assistance Foundation (CFPAF) - The CFPAF helps people with CF afford the medications and devices they need to manage their disease.
  • Social Security Project (SSP) - A CFPAF-sponsored program that helps people with cystic fibrosis apply for Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) benefits.
  • CFF Case Management & Technical Assistance - A team of case managers that support CF care centers and people with CF to understand and navigate insurance, reimbursement and coverage issues. 
  • Patient Assistance Resource Library - An online database that provides documents, template letters and other tools for people with CF, caregivers and insurers.
  • CF Legal Information Hotline - A resource sponsored by the CF Foundation that provides free information about the laws that protect the rights of individuals with CF.
  • CFF Mutation Analysis Program (MAP) - A free and confidential genetic testing program for people with a confirmed diagnosis of cystic fibrosis to help make informed decisions about treatment options.
  • Spanish-Language Materials - Information about the Patient Assistance Resource Center, and the services provided, have been translated into Spanish and are available as handouts.

The above information has been taken from the Cystic Fibrosis Foundation website.  For more information, visit them at http://www.cff.org/.

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