A Cystic Fibrosis Diagnosis No Longer Automatically Qualifies for Make-A-Wish

 

Children with cystic fibrosis (CF) born between 1995 and 1999 had an estimated life expectancy of 32 years. Advances in both research and treatment have contributed to increased life expectancy; in those born between 2015 and 2019, life expectancy has risen to 46 years. In part, this contributed to the Make-A-Wish Foundation’s announcement that a cystic fibrosis diagnosis no longer automatically qualifies a child for a wish starting in 2024. 

According to Scripps News, however, this does not mean that children with this disorder cannot receive any wishes from Make-A-Wish. It simply means that they will assess each situation on a case-by-case basis to account for cystic fibrosis’ variable nature. CF will join other conditions, such as heart disease, epilepsy, and certain oncology subtypes, that do not fit into the subset of automatic qualification. 

The Make-A-Wish Foundation has been granting life-changing wishes to children with critical illnesses and their families for over 40 years now. 

About Cystic Fibrosis (CF)

Healthy mucus is thin and slippery, but in people with cystic fibrosis, CFTR gene mutations alter salt movement in the body. This causes their mucus to become thick and sticky, accumulating in the airways and gastrointestinal system. This can lead to breathing difficulties and also make it more difficult to absorb nutrients. Cystic fibrosis often occurs in caucasians and is much rarer in people of other ethnic backgrounds. Many children are diagnosed at birth through newborn screening panels. Symptoms of this disorder can include:

  • Frequent lung infections 
  • Poor growth and/or weight gain
  • Exercise intolerance
  • Nasal polyps
  • Shortness of breath
  • Recurrent or persistent coughing or wheezing
  • Constipation
  • Stuffy nose
  • Chest and abdominal pain
  • Greasy, foul-smelling stools
  • Very salty tasting skin
  • Nail deformities
  • Male infertility 

Managing cystic fibrosis may take a multi-pronged approach. Treatment options may include antibiotics and anti-inflammatories, bronchodilators, exercise therapy, chest physical therapy, vest therapy, pancreatic enzymes, TRIKAFTA, and surgery.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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