Someone I love Needs a Cure

I’m a CF Dad and someone I love needs a cure.

Cystic fibrosis, also known as CF, 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; and
  • 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 late 30s.

Prenatal Genetic Testing

Children who are not diagnosed before birth risk not being diagnosed until their toddler years. By the time they are diagnosed, they can be years behind in treatment that will help them thrive and grow. Treatment that can help Mom and Dad stay ahead of infections. Knowledge that some 18% of babies with CF will have a condition known as Meconium Illeus at birth, a severe blockage of the intestinal tract.

My daughter, Carleigh, had meconium illeus. But thanks to her early diagnosis, the experts at Arnold Palmer Children’s Hospital (Thank you Dr. Lipscomb and the Arnold Palmer NICU!) in Orlando, Florida, were aware of this possibility and acted quickly to avoid long-term complications for my daughter’s health.

The Cystic Fibrosis Foundation

Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

CFF has some great partners: The Boomer Esiason Foundation, Cystic Life, The Chipper Jones Foundation, just to name a few. Keep these folks in mind during your holiday charity donation drives…or just because.

Thank you for taking the time to read this. It means a lot to me.

 

7 Responses to Someone I love Needs a Cure

  1. Maxine Slater says:

    Carleigh is such a dear child! She is in my thoughts and prayers, and CF is one of the charities to which I donate.

  2. Nancy Bielawski says:

    Glad you posted this, Tom. So many people are not aware of CF and it is a terrible disease. It is heartening how much progress has been made but so much more is needed. I get the idea that they are close to some major developments and support for the charities dedicated to this pursuit will make a big difference!
    When I was a child, there was a neighbor whose son had CF. I remember my mother telling me how terrible that disease was, and that the child would not survive more than a couple of years. He did not.
    I never heard much about CF again until I learned that Carleigh was going to be born with it. I was devastated, as I was unaware how much the medical situation had changed. Thank God she has a much better outlook than that child did. I pray regularly that this awful disease will be defeated completely and that Carleigh and the others will be able to look forward to a long and healthy life.

  3. Kelly says:

    Hi CF Dad – I’m a CF Mom… thanks for sharing! Hope this message finds your little one in good health.

    • admin says:

      Hi, sorry I took so long to write back. I get about 100 spam posts for every real post on this site. I have to do something about that. Anyway, thank you so much for checking in. We CF parents have to stick together. My daughter is doing well, I hope your child is well too.

      Tom

    • admin says:

      Thanks CF mom! Im sorry for not replying sooner. This site was inundated with spam posts and I just couldn’t keep up. I hope your child is blessed with wonderful heatlh. Ours is doing well and I cannot complain. God Bless.

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