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Other than saying CF is a chronic illness there is no easy way to explain it. I have learned that once you say something it brings up more questions, I wrote a little pamphlet to try to get people to understand for fund raising time. All information gathered was from medical sites and professionals.
What is CF?
Cystic Fibrosis is the most fatal genetic disease in the US. There are approximately 70,000 people worldwide with the disease, and about 30,000 are in the US.
How do you get CF?
You can't catch CF. Cystic Fibrosis is a hereditary chronic illness. A person is born with the disease and to have it the person must have received a defective form of the autosomal recessive gene CFTR (cystic fibrosis transmembrane conductance regulator) from each parent.
Most people that have the defective gene don't know they have it, until they have a child that is born with CF. That is why awareness is so important.
When two people with the defective gene have a baby there is a 25% chance the child will be born with CF.
How does CF affect the body?
CF affects the body of every patient differently, but it targets all of the same areas.
The CFTR gene is responsible for producing the proteins our body needs to make mucus, sweat, saliva, tears and digestive enzymes properly. It is responsible for how chloride is transported through our bodies and helps control the movement of water in tissues and maintain the thinning of mucus and other secretions. It controls how sodium flows through our body. The functioning of these elements ensure that organs such as the lungs, pancreas, liver, and intestines work properly. When the gene is defective it causes abnormally thick mucus that is hard to break up. The blockage caused by the thick mucus causes lung infections, makes it to where our bodies can't absorb fat, causes serious digestive problems, clubbing of the fingers and toes, and progressive disability due to multisystem failure.
Since the way chloride and sodium isn't working properly, people with CF also sweat a lot and get over heated easily.
The imbalance of salt in the sweat can lead to heart problems, such as strain because of malnutrition and abnormal heart rhythms.
Infertility is also common with CFers and it affects both men and women. Statistics show that at least 97 percent of men with CF are infertile, and are missing the tube that connects the testes to the ejaculatory ducts of the penis, but are not sterile and can have children with assisted reproductive techniques. About 20% of women with CF are infertile. Others may have fertility issues due to thickened cervical mucus or malnutrition. In severe cases, malnutrition disrupts ovulation.
What are the symptoms?
Frequent infections, poor growth despite having a ravenous appetite, foul bulky stools or constant constipation, salty tasting skin, persistent coughing, and nasal polyps.
How are you diagnosed with CF?
CF can be diagnosed through newborn screenings, genetic and sweat tests.
What is the treatment for someone with CF?
Treatment varies on the patient. No two patients are the same.
No matter how well or poor each CFers health is they all have several medications, nebulized treatments and CPT (Chest Physical Therapy). This fills up a great portion of the day for them and their caregivers.
Will the medication get rid of CF?
No, there is not a cure for CF. It is a chronic illness and the condition of each patient deteriorates after time. That is why proper care, medication, further education and especially awareness is key to helping in the fight against CF.
How can I help?
There are many ways to help us in the fight. First and foremost is helping get the word out about the disease. This is the most fatal genetic disease there is in the US and the government doesn't help in supporting grants or research for better treatment for CFers. We want to get the word out that way we are closer to a cure. So with a simple forward to your friends by way of this application you can possibly help a pregnant woman get her child diagnosed early, before it's too late.
Second would be donations, every penny truly counts, and is 100% tax deductible. The Cystic Fibrosis Foundation is the main source for funding in the vital research, education, providing the necessary medication and supplying doctors who are dedicated to the fight and well being of those that have CF.
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∙ 14y ago
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How do black people get cystic fibrosis?
The Same Way Any other person would get CF (Cystic Fibrosis), although it's Very Rare For African Americans to get it. Cystic Fibrosis is most common among Caucasians.
Can people be carriers of cystic fibrosis and not know?
There are no symptoms or anything in a carrier of cystic fibrosis. The only way to find out is to get tested, or if you have a child with cystic fibrosis, you must be a carrier, as well as your partner.
Can Cystic fibrosis be prevented?
Cystic Fibrosis cannot be prevented. It is an inherited disease, so there is no possible way to prevent something inherited. One parent will be a carrier and so will the other parent, therefore resulting in the child having CF.
You have cystic fibrosis will your baby have it?
that depends on the father, if he also has CF then yes, if he is a carrier then 50%ish will be, if he is not affected in any way, then no but they will be carrers.
How can a child have cystic fibrosis?
Cystic Fibrosis cannot be prevented. It is an inherited disease, so there is no possible way to prevent something inherited. One parent will be a carrier and so will the other parent, therefore resulting in the child having CF.
What is the treatment for Cystic fibrosis?
the only way to prevent or cure it would be with gene therapy at an early age. Ideally, gene therapy could repair or replace the defective gene.ues
Is their ever going to be a cure for cystic fibrosis?
There will be a cure when there are more people with it and there is alot more funding for research. As for now, people are busy trying to find cures for cancer. The numbers of patients with cancer out weigh those with Cystic Fibrosis, therefore Cystic Fibrosis research is given less financial aid. It has to do with numbers. Also waiting on improved technology as always.
What is the genotype of two normal parents who have a child with cystic fibrosis?
The genotype would have to be homozygous recessive if the child was completely effected by the disease. The "normal" paretns would have to have heterozygous recessive genotypes. This makes sense since the allele that causes sickle cell shows incomplete dominance when present with a normal allele in a pair. The "normal" parents actually would have a mixture of sickle cell shaped red blood cells combined with normal shaped ones. The carrier parents does not display symptoms of the disease since the regular red blood cells alone can fill the body's need for oxygen under normal circumstances. The only time the cArrier would notice would be under times of extreme oxygen demand, such as a sprint.
What is the current life span of a person with cystic fibrosis?
There is no cure for CF, and most individuals with cystic fibrosis die young: many in their 20s and 30s from lung failure. However, with the continuous introduction of many new treatments, the life expectancy of a person with CF is increasing to ages as high as 40 or 50. Lung transplantation is often necessary as CF worsens.
Can someone with cystic fibrosis die from getting punched in the stomach?
Punching someone is the stomach that has CF is no different than punching someone in the stomach that doesn't have CF. Either way - it's not a nice thing to do to somebody!
Is cystic fibrosis linked to cerebral palsy?
No. Cystic fibrosis is a disease in the conduction and regulation of chloride ions across the intra cellular and extra cellular compartment. So in CF, there is an increase in the intracellular accumulation of chloride. This further deposited Chloride ions attract the Na ions since they are basically oppositely charged. And the Na ions are osmotic they tend to pull in the water molecule too. This causes drying of the normally secreting mucous leading to crusting of the mucus and obstruction to the lumen. So cystic fibrosis mainly affects the glands with hollow lumen! Like Bronchi, Pancreatic duct and Intestine [bowels]. So there is no way that CF could be linked to Cerebral Palsy which is more of neurological.
Why does cystic fibrosis make people infertile?
Over 95% of males with cystic Fibrosis are infertile. There are 3 reasons why this is true. 1) Often, the males lacks the pretense of his vas deferens, the tubes which move sperm from the testicles to the penis. 2) At other times, the vas deferens is blocked, and sperm are unable to pass through. 3) Finally, when there is a sufficient opening for the sperm to pass through, the sperm are insufficiently mobile and cannot make their way through the vaginal tract to the female egg.
