Monday, December 04, 2006

A Little History of Cystic Fibrosis

...A Swiss nursery tale includes the worrying warning line: Woe is the child who tastes salty from a kiss on the brow, for he is cursed and soon must die. A medical textbook written in 1705 suggested that if a child's sweat was unusually salty, the child was bewitched and unlikely to survive. The association between the devil, witches and salt was then firmly established in folk law.

In 1938 cystic fibrosis was described in the American Journal of Diseases of Children and was accepted as a diagnosis, but it wasn't understood or widely known about until many years later. There was for example no mention of it in Sir Wilfred Sheldon's textbook of Diseases of the Infancy and Childhood published in 1951, and only a glancing reference in The Principles and Practice of Medicine, edited by Sir Stanley Davidson in 1952.

Retrospective studies have shown that during the First World War (1939-45), a child born with the condition was likely to live for just one year. Initially, neither GPs nor, surprising pediatricianians were enormously interested in the condition because they assumed that, as every system in the body was likely to become involved, the patient's life-span would be short and his or her existence miserable.

This once-defeatist attitude has been reversed by an understanding of the causes of cystic fibrosis and the measures that can be taken to prevent the disease and lessen the impact of its symptoms. A once debilitated baby is now able to look forward to a reasonably good quality of life and to live to early middle-age. In fact, life expectancy has increased so rapidly over the past 50 years that it is now impossible to predict the likely prognosis of a baby. - Times Online UK

I find it hilarious that people used to believe the devil caused Cystic Fibrosis. And yet our neighbor (who is 21) was telling me the other day that all illnesses are caused by evil spirits. Wow, wow, wow! I guess we can stop the time-consuming treatments and just have a priest come over for a good ole-fashion exorcism. Geesh, what year is this?

It was Froggy's salty skin that led me to believe her poor weight gain was CF. Our good friend Chanin (who is a Nurse Practitioner) asked if Froggy's skin ever tasted salty. When I asked her why, and she answered that it was a sign of CF, I just knew. I took Froggy into the other room and bawled. I knew, I knew, I knew. She tasted like she'd been dipped in the ocean. My little sea nymph. Rather than possessed by some evil spirit, or a witch's curse, I'd like to believe that Froggy was kissed by Neptune and swam beneath the sea before she was born. And now she tastes like the history of the world. She is older and wiser, and possesses the secrets of the sea. It's a much better story than the devil, witch's curse, or bad gene.

Thank God we are living in a time when therapies and research are literally changing the fate of those "possessed" with CF. I know my little girl will live to 100. It may take prayer, witch's herbs, and gene therapy. But it will happen!


Anonymous said...

wow. jcn

Mieke said...


That is just exquisite! Neptune. I am crying. I love that. I love you!

Anonymous said...

Led by an insightful and brave mother like you, Froggy will surely not only conquer her disease but the world and heavens as well. xo LBC

Anne said...

Wow- what an amazing post. Froggy is one lucky baby. As a mother, you remind me to always see the amazing gifts our children bring.
Enjoy your blog!

Froggymama said...

Thank you everyone. It helps to have such kind support!

Anonymous said...

Very interesting. I knew a boy with cystic fibrosis in high school. Unfortunately he died at the age of 18 from the disease (ironically, a year before the gene was discovered in Toronto). Anyway, I will always remember him, so I read what I can about cystic fibrosis.

Emilia Liz (