Living in the Land of Black Hawk
Rock Island, IL

Cystic Fibrosis

I have recently been diagnosed with Cystic Fibrosis. My genotype is DeltaF508 and D1152H. My mother lived with Cystic Fibrosis till she was 58 years old. She was quite a fighter. We never suspected that we kids had it. What I wonder, would my mother think of that? it turns out that my father did in fact have the CF mutation d1152h. This CF gene was discovered about 5 years ago. If it weren't for my sister doing her own research and having an issue with her lungs we still wouldn't know.

Interestingly, even though we thought we didn't have it, we actually had a greater chance of getting both defective genes because our mother had two bad genes and my fathers one bad gene (that we know of for sure). For all we know, he may have a mild form of it too. For my grandparents the chances were 25% for each child born that it might have CF. For us kids it was a 50% chance.

One of the interesting things about it is that if one were to guess which of us would be in worse shape you would think it would be me. I've abused my body much more than my sister however her lung problems seem to be worse than mine. Two things I think make all the difference for me. Using my bicycle most of my life rather than a car, my use of medicinal herbs and my focus upon diet which for a long time has been fairly healthy.

I use my bike as my main mode of transportation and I think of it that way. I have probably averaged more than ten miles per day since I was 15 years old.

I use an herb which acts as an expectorant. I cough while using this herb. The current political climate prevents me from being more specific but I believe that in the end we will find more than anecdotal evidence supporting the use of this herb for cystic fibrosis (already widely used in the United States for both recreational and medicinal use and quite legal in a number of states).

When I was young, I was diagnosed as having ADHD and put on ritalin. I very quickly dumped the ritalin in favor of the previously mentioned herb which worked much better. My mother, bless her heart, put me on a health food diet when I was 10 I think (and said i could smoke my funny herbs in my bedroom). I was allowed No food additives or dyes etc. Eventually I went vegetarian. I have been studying the relationship between food and health for a very long time. I believe it has made all the differnce.

So, to re-cap; Exercise to the point of being athletic (no joke!), Natural expectorant herbs to counter the tobacco, and excellent whole foods from the garden. The exercise that I've always gotten has given me an edge on survival and is the thing recommended by most doctors that treat CF patients. Get active! As active as you can!

What exactly is Cystic Fibrosis

Cystic fibrosis (also known as CF, mucovoidosis, or mucoviscidosis) is a genetic disorder known to be an inherited disease of the secretory glands, including the glands which makes mucus and sweat.

The main hallmarks of cystic fibrosis are salty tasting skin, appetite but poor growth and poor weight gain, excess mucus production, and coughing/shortness of breath. Males can be infertile due to the condition congenital bilateral absence of the vas deferens. Often, symptoms of CF appear in infancy and childhood. Meconium ileus is a typical finding in newborn babies with CF.

Although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-shortening genetic diseases. It is most common among nations in the Western world; one in twenty-two people of Mediterranean descent is a carrier of one gene for CF, making it the most common genetic disease in these populations.[citation needed] An exception is Finland, where only one in 80 people carry a CF mutation. In the United States, 1 in 4,000 children are born with CF. In 1997, about 1 in 3,300 caucasian children in the United States was born with cystic fibrosis. In contrast, only 1 in 15,000 African American children suffered from cystic fibrosis, and in Asian Americans the rate was even lower at 1 in 32,000.

Cystic Fibrosis is a monogenetic disease. Most genetic diseases involve more than one gene.

See; Wikipedia; Cystic Fibrosis

Theories about the prevalence of CF

The DeltaF508 mutation is estimated to be up to 52,000 years old. Numerous hypotheses have been advanced as to why such a lethal mutation has persisted and spread in the human population. Other common autosomal recessive diseases such as sickle-cell anemia have been found to protect carriers from other diseases, a concept known as heterozygote advantage. Resistance to the following have all been proposed as possible sources of heterozygote advantage:

Cystic Fibrosis Links

• Mutation Details for D1152H
• D1152H On Pub med
• Cystic Fibrosis Foundation Genotyping Center
• CFF Non-Classic CF Genotype/Phenotype Database
• Cystic Fibrosis Mutation Database
• Cystic fibrosis at the Open Directory Project
• Cystic fibrosis transmembrane conductance regulator (CFTR) and renal function.
• Genecards Human Gene Database
• Breathe 4 Tomorrow Foundation (B4TF), a US-based organization focused on making life easier one breath at a time for people with CF through assistive services, awareness and research.
• Cystic-L, Cystic-L is both a Listserv and a website dedicated to the exchange of information and support specific to cystic fibrosis. Operating since 1994, Cystic-L serves people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others.
• Cystic-L Research News
• clinicaltrials.gov -cysticfibrosis Explore a list of current CF clinical trials from ClinicalTrials.gov, a service of the U.S. National Institutes of Health
• Cystic Fibrosis Foundation (CFF), a US non-profit providing the means to cure and control cystic fibrosis
• Cystic Fibrosis Lifestyle Foundation - CFLF seeks to create therapies that engage adolescents and young adults with Cystic Fibrosis as active agents in their healthcare physically, psychologically and spiritually, thereby enabling attitudes and lifestyles that create stronger and longer lives for themselves. Founded by Brian Callanan.
• Cystic Fibrosis-Reaching Out Foundation, a US-based network of information and support for people with CF and their families
• Boomer Esiason Foundation, a US-based organization supporting research aimed at finding a cure for cystic fibrosis as well providing education and raising quality of life for people with cystic fibrosis, named after Boomer Esiason, a former NFL quarterback, whose son Gunnar has cystic fibrosis.
• Lungs for Life Foundation, a US-based organization focused on improving quality of life for people with CF through assistive services, education and research
• Elizabeth Nash Foundation, a US-based organization focused on research, education and patient support, named after scientist Elizabeth Nash
• National Cystic Fibrosis Awareness Committee (NCFAC), a US-based group focused on increased public CF awareness through an annual national Cystic Fibrosis Awareness observance
• Rock CF Foundation, a US-based non profit organization that uses the arts, entertainment, fashion and fitness to increase awareness and raise funds for cystic fibrosis. Founded by Emily Schaller.
• Liv for a Cure, a US-based foundation dedicated to raising money for fight against Cystic Fibrosis.

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