My introduction...

Where do I begin? My name is Claudia and I am a 25 year old married pharmacy student with Cystic Fibrosis. Since I am studying in the medical field and our everyday language consists of medical terms and medication names that are a mile long and strange medical abbreviations, I may have a tendency to use them in my blog. But I am going to try my best to put it in the simplest of terms, and if there is something you don't understand, please don't hesitate to ask me! The key to being a great pharmacist is to be able to translate all the medical jargon we learn into something that someone with a 5th grade reading level could understand.

In case some of you do not know what Cystic Fibrosis (CF) is, it is a life threatening genetic disease that involves multiple organs (most commonly lungs and pancreas). It is due to a mutation in the gene CFTR (Cystic Fibrosis Transmembrane Conductance Regulator). Without at least 1 fully functioning CFTR gene, sodium chloride and water are unable to move into and out of the cells. This leads to production of thick mucus which can build up in various organs of the body and can cause severe complications. There are many types of mutations that can occur with the CFTR, therefore CF severity can range from asymptomatic to life threatening. I have met CF patients that only had pulmonary complications and others who only had digestive or reproductive organ issues. In my case, I have both digestive and pulmonary complications.

I was diagnosed with CF at the age of 3 and 1/2. Mom knew something was wrong with me within a few days of bringing me home from the hospital after I was born. No matter how much she fed me, I just never seemed to get full. I had severe diarrhea after each feeding and as I grew older and started eating solid food, everything would pass through me undigested. I began looking like those poor starving kids in 3rd world countries with my swollen tummy and tiny arms and legs. She took me to doctor after doctor trying to figure out what was wrong with me. Then one day I caught a cold that just didn't seem to go away. So she took me to the ER and one of the doctors there mentioned the possibility of Cystic Fibrosis. So mom immediately made an appointment with a CF specialist in Greenville, NC. At my appointment they performed a sweat test on me. This is a special test that measures the amount of chloride that is released in sweat. I was immediately diagnosed with CF at the conclusion of the test.

Like any parent that finds out there is something wrong with their child, my parents were petrified. All they had ever heard about CF was "fatal lung disease" and that most children didn't live past 12 years old. After they got over their initial shell shock, they made the decision to treat me like any other kid (except for adding in medicine, chest pt, and breathing treatments) and not to put limitations on my life. They didn't want to put me in a bubble, they wanted me to feel like a "normal kid." So I was involved in girl scouts, acrobatics, gymnastics, jazz, tap, ballet, karate, softball, swimming, and playing the clarinet in the band. And I went right on through high school without ever being admitted into the hospital! Most people didn't even know I had CF because I was very discrete about it. It was almost as if I was ashamed of my disease. I didn't want others feeling sorry for me or treating me any different. I remember I would tell kids in my class that the reason I coughed so much was because I had allergies. When I had to take my enzymes before lunch I would turn my head or excuse myself to the restroom so that no one would see me. It wasn't until my second year in college that I became more open about my CF. I had finally realized that CF was a part of who I was and if someone couldn't accept it, then they weren't even worth my time.

It amazes me still today that alot of people don't even know what Cystic Fibrosis is. Some people just refer to it as "a lung disease." But it is so much more! It involves so many organs and affects so many peoples lives! Over the years there have been so many advances in the treatment of symptoms of CF, which has allowed people to bypass the initial 12 y/o then 18 y/o and now 30 y/o life expectancy. I hope one day there will be a cure so all of us CFers aka Cysters can "breathe easy."