Living with a Child with Cystic Fibrosis

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My daughter was diagnosed with Cystic Fibrosis after having a heel prick and a sweat test done (that is the simplest way of diagnosing CF) not long after she was born.

CF is an inherited disease which causes the body to fail in its normal functions; the affected glands are the exocrine (for “outward secreting”) glands. About one person in every twenty carries the gene for CF but a baby will only be born with it when both parents are carriers of the gene. In some children the lungs are affected which often results in physiotherapy, and some have poor weight gain where digestive enzymes are needed; these take place of the natural enzymes that are trapped by the blockage in the ducts of the pancreas. CF isn’t contagious, nor does it impair intellectual ability.

Common symptoms include recurrent wheezing, persistent coughing and excessive mucus, recurrent pneumonia, abnormal bowel movement, salty taste to skin, nasal polyps (small fleshy growths inside the nose), clubbing (enlargement) of the fingertips, and failure to gain weight (often despite having a good appetite). The best way to maintain a healthy lifestyle with CF is a good diet, exercise, chest therapy, vitamins and medication; as the disease is not curable at this time.

Illustration of clubbed fingers.

My daughter is now 16 years of age and doing me proud. She looks no different than any other child. She works 2 jobs, has a boyfriend, and really good understanding friends. She will have to be treated for CF for the rest of her life, but we hope one day soon they’ll find a cure for this cruel disease.

By Huni-Bee

1 Comment

  1. Pelin

    13/03/2012 at 8:48 PM

    Desiree, thank you for such a wonderful cmnmeot, it made my day to hear that someone was inspired by my story. Sorry to hear that you’re ill, it’s no fun, trust me I can sympathize. The first step as cliche as it sounds is to admit that you need help, that you can’t do it alone. Nobody should ever have to do anything like what you’re going through alone. The worse thing you can do is shelter yourself away from people. Trust me, ask the people around you for support and help weather it be to come to an appointment with you or even if it’s something big. Soon you’ll find people are not only willing to help, but it makes them happy to help. There is so much support out there, just open yourself up and learn to accept any kind of help and support that comes your way. Another thing, the doctors do help but try to tell yourself I’m not as sick as they say. and GOOGLE, it’s amazing the things you find, try new things on your own and good nutrition is key. I want to help, I want you to do a 180 like I did. I am always here to listen and you are in my prayers.

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