Cystic Fibrosis Awareness Month on May, 2024: How close can one with Cystic Fibrosis be to living a "normal" life?
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It really varies with the person.
My boyfriend is very fortunate-- he has a mild case. At 19, he's only had to have sinus-clearing surgery twice (three times? I can't remember), and is expected to live well past the 37-year median age of survival. There are many people that don't ever make it to adulthood.
Most CF patients are at a nine. They take pills with every meal (pancreatic lipase, the number of pills is determined by weight of the person), which is more problematic for kids than for adults (for small children, the enzyme pills are mixed with applesauce or ketchup). Every other month, my boyfriend has a tobi-abuterol treatment he does twice a day (it's an antibiotic and a bronchidilator, respectively). Women can still have children (men are generally sterile). CF patients can still play sports (sports and choir are actually encouraged, because of the lung exercise) and do everything else that others do. They can eat as much as they want, because they're still going to be skinny. They lead normal lives.
What it takes to make them healthy: Exercise is the single most important thing. Adequate nutrition is the other--sure, they can eat all they want, but since they're bodies are absorbing less, they need to eat more nutritionally-dense foods. CF patients are more prone to infection, and thus it is more important to stay active and healthy in the winter months, when infection is more prevalent in the general population
Finances are very hard. Insurance policies generally cover generic and brand name prescriptions, but what about "rare" ones? almost all CF prescriptions (Tobi, Creon-5, Abuterol) fall under that category. Insurance plans that require you to go to netwok doctors can be very frustrating--at my boyfriend's last doctor appointment, we walked in of his doctor pulling up the Cystic Fibrosis Wikipedia page. We've been dating for several years, but have yet to get married because we can't afford the health insurance (which is now covered by his mom's work policy).
Emotionally, it's hard on the family--CF awareness is very low, and it's very hard to know that the love of your life will die before you have a 30 or 40 year anniversary with them. There are no drugs that have been tested and deemed safe for elderly CF patients, because there are not enough elderly CF patients to test them on. It's hard for the CF patient to know that they have a shorter life, but not to really know how short that life may be. To be a CF patient, or to be close to one, is emotionally painful. Knowing you're going to die, or that the love of your life is going to die, HURTS.
I know it sounds silly, but thank you so much for doing this project. Thank you SO much. CF awareness is ridiculously low.
If i have the gene of cystic fibrosis, can my child have it?
In order for a baby to be born with CF both the mother and father must be CF gene carriers although the chances, if you do genetic mapping, are 1 in 4 that the child will have CF (2 in 4 that they will be a carrier and 1 in 4 that they will neither have CF nor be a carrier). Obviously mother nature never seems to quite work according to genetic mapping patterns since some families can have multiple children with or without CF, or a combination thereof.
Since CF is a genetic disease you either have or don't have it although in some individuals the symptoms of the disease are either misinterpreted or undiagnosed for years. The CF gene is recessive so typically there is family history of the disease although absence of CF diagnosis within the family is not a guaranteed sign one way or the other.
Your pediatrician should be able to do a simple test to determine whether your sonhas CF. Even if he doesn't have CF you should, at some point, have him tested to determine if he is a CF carrier since he needs to be aware of the potential consequences when he reaches an age to think if marriage and a family. Prior to having additional children, if you choose to do so, your son's father should be tested for the gene so that you can both be aware of the potential for CF.
If it helps to ease your mind, I'm a 39 year old CF patient and I've had a relatively normal life and good health aside from the CF and things specifically related to it. Two years ago, on 08/26/04 I had a bi-lateral lung transplant due to the progressive damage to my lungs over the years from lung infections and scarring. I've been married for 9 years, I'm a college graduate and graduated with honors (went to night school 12-18 hours/semester while working both a full-time and part-time job), I've worked full time all my adult life (right up to my transplant and back working 13 days after the surgery). I'm a Sr. Mgr. at the world headquarters of a Fortune 500 company and have been employed with them for just short of 17 years. My husband and I chose not to have children for a multitude of reasons but we have five feline children (with a side benefit of the lung transplant being that I don't have to ever clean litter boxes again!).
A lot of the reason I've done so well can be contributed to how my parents handled raising me with the disease. I was told as early as age 3 that I had CF and that I may not be able to do all the things other kids could do but that I should try if I wanted to. I knew I took pills and had daily nebulizer and chest physio-therapy treatments that others didn't have to do but that it was to keep me from being sick. I wasn't allowed to feel sorry for myself, although my parents were compassionate when I had down times. I was expected to get good grades in school and study the same as everyone else and although my parents obviously didn't know what my life expectancy would be they always acted as if I needed to plan for a full "normal" life. By age 10 I knew the full impact of CF and the corresponding life expectancy but it just didn't seem to apply to me since I happen to be just a bit stubborn (not surprising with a CF'er). I also look at it that everyone has some sort of challenge in their life and CF happens to be mine.
While I sincerely hope that your son does not have CF if he is ultimately diagnosed with it I hope you can be strong enough to support him as a person and not just a CF patient/medical case. CF awareness has greatly increased over the past four decades and there are many support groups both locally and on line as well as tremendous advancements in the disease treatment. The Cystic Fibrosis Foundation is a good resource for information if you would like to do additional research. Their website is .
Cystic Fibrosis....do you know what it is?
my 13 yr old son has it so yes i know what it is. I am very sorry to hear of your loss, keep up with the charity work one day there may be a cure x
edit; Dr House stop pretending you are a doctor