Cystic Fibrosis Awareness Month on May, 2020: support for international Cystic Fibrosis child?
May, 2020 is Cystic Fibrosis Awareness Month 2020. 65 Roses For Marcia: CF Awareness...How do you get Cystic Fibrosis How do you get Cystic Fibrosis
childhealthinternational.org - Cached
Cystic Fibrosis Center - Links - Children's Memorial Hospital ...
Children's Memorial Hospital, Chicago, one of the top pediatric hospitals in the country, ... International Association of Cystic Fibrosis Adults. www.iacfa.org.
www.childrensmemorial.org/depts/pmcc/cystic... - Cached
ICFA International Cystic Fibrosis Awareness
What are some facts about Cystic Fibrosis?
Cystic fibrosis (CF) is a genetic disease that affects the entire body, but mostly the respiratory system. It causes thick, sticky mucus to clog up your lungs, sinuses, and also parts of your digestive system. Due to this people with CF have have to take many daily medications (my record is 13 pills at a time!! :D ), including enzyme pills every time you eat (I personally have to take 4) since their bodies don't make the enzymes that normal peoples do. We also have to do breathing treatments every day, normally about 3 times a day, that include inhaled medications and some sort of CPT (chest physio therapy) like the Vest or what I do is the Acapella, a device I blow into that has back pressure and also flutters to vibrate my lungs and knock the mucus off. People with CF also have to get IV antibiotics every now and then, normally requiring a hospital stay, personally I go in about every 3 months for 2-3 weeks at a time. CF can also cause polyps to grow in your sinuses, and I've had to have 2 surgeries so far to get them removed. There is currently no cure for cystic fibrosis, though they have been coming out with new treatments and medications to improve quality of life :) The average life span of someone with CF is currently 37 years old, though some live much longer and some live much shorter. Life with CF can suck, but everyone has problems, and it's what you do through your problems that makes you strong. I believe CF has made me a stronger person. I would still be happy for a cure though! So raise awareness! Get the word out! And lets get rid of this disease!!!!!
my brother has cystic fibrosis?
I'm a 40 year old CF'er so I've had many years experience with pseudomonas. In virtually all CF'ers it colonizes in our lungs by age 10 - nothing we can do to prevent it, it just is. Pseudomonas is difficult to fight because it basically develops a 'slime shell' over itself so oral and inhaled antibiotics are not as effective over the long term as IV's. Your brother will get plenty used to those and the corresponding hospital stays. Most of us refer to those a 'tune-ups'. When it's time for a tune-up he'll cough more frequently and more intensive - possibly resulting in vomiting from coughing so hard. He'll likely lose his appetite and according lose weight. He'll be tired and get tired more easily than normal. Depending on the severity of his CF and the pseudomonas levels in his body he may go years between tune-ups or it may only be a matter of weeks or months. As the disease progresses his medical routine will intensify and the infections will present themselves more frequently. Unfortunately the infections will damage his lungs, which is what eventually leads to the need for a lung transplant. I was fortunate in that I didn't need my first tune-up until I was 17 and my next one wasn't until 4 years later. At the point it's time for a tune up he'll definitely feel like he's ready for it. The key is not ignoring the symptoms (which we are very adept at doing) and delaying it while it's damaging our lungs.
The best thing he can do to help fight it is to follow his doctors' medical routine - do all the inhaled therapies, the CPT/vest/etc., keep active as much as possible, take all the meds, etc. He'll have to decide as he gets older how much he wants to deal with all of that - it's a trade off at some point between feeling like we have a 'normal' life vs. just living for a medical routine. He does however, need to maintain a high level of compliance or he won't be considered for a lung transplant when the time comes. Simple things like avoiding people who are sick, washing his hands a lot or at the very least using Purell, Germ-X, etc. will help keep him more healthy. Things like colds, strep throat, etc. that are 'normal' for most people can have more severe effects on CF'ers.
Bad news is that CF is eventually fatal and as it progresses we experience additional side effects from the disease that further tax our bodies such as diabetes, osteoporosis, liver hardening, etc. Good news is that they have made many advancements in medications and treatments over the years, including lung transplant. They medical experts have more information from which to develop treatment plans because the diagnosis rate has increased as awareness of the disease has grown. I was diagnosed at about age one but was suspected as having CF shortly after birth due to complications that are specific to CF and my pediatrician just happened to know about CF. There weren't many of us diagnosed in those days - I was the only one in our town of 30,000 that was known to have it and I remained the only one until I was about 10.
Now that your brother has been diagnosed he can get the treatment he needs. You can help by just being there for him to talk to, provide him help when he's not feeling well, etc. Try to help him find humor in it - there is certainly plenty of it in the medical community!