Things People with Cystic Fibrosis Want Others to Know

Instead of reaching out to others who may be different, many just pass judgement. This leads to misunderstanding about—and even the shunning—of people who are labeled “outside the norm.”

One group of people who are asking to be better understood and supported by the main population are those with cystic fibrosis. From an article by Ailbhe Malone, the input of people with CF are highlighted next.

Some of those with CF who’ve been interviewed have expressed a desire to tell others many things about their chronic and incurable condition.

Those with cystic fibrosis want to be understood better and want the support of main population. They want others to know some things about their incurable and chronic condition. 

• Unable to control cough - In CF excess mucus is produced and this causes chronic cough. Sometimes it sounds like acute bronchitis. It is not uncommon to vomit up excess phlegm.

• Not infectious - They want others to know that CF is not infectious. The coughing spells are embarrassing and exhausting. 

• Takes hours to get ready - It takes so much time to treat their condition. It can take hours for breathing treatment alone.

• Need to be super organized- Organization is a must for people with CF. Pulmonary exacerbation can be caused if any of the medications are skipped such as nebulizers, inhalers or digestive enzymes. Antibiotic treatment may be required.

• Get up very early - It becomes very complicated to stay on schedule with treatment and medications. To squeeze everything in they might have to stay up late or get up early.

• Must consume a lot of food  - In order to keep CF under control, a high calorie diet is needed. Due to nutrient absorption issues, weight maintenance can be very difficult, so 3000 calories are needed per day. The pancreatic enzymes needed for absorption are blocked by the pancreatic duct, so in order to aid in digestion, enzyme medications are taken.

• Exercise daily - This helps to build a healthy body and the rate of decline of lung function can be slowed down.

• The disease is genetic - The condition is passed on via mutated genes. There is a chance of one in four if both the carry the defective gene. Males are sterile and if a female is suffering from CF and becomes pregnant and the male carries a recessive gene then the chances of having CF child is 50 percent.

• It's invisible - A person with CF will not look any different from someone who doesn't have it.