Cystic Fibrosis

I have Cystic Fibrosis, children call it { 65 Roses } : it's a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.

Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

I currently take 4 { creon capsules } which are enzymes with each snack, and 8 with each dinner. I've been really lucky that I have not needed a lung transplant or had any serious complications with my respiratory system. But I am the low percentage that has a worse digestive system.

Most people with CF are skinny, so why am I fighting to lose weight? Was I mis-diagnosed somewhere along the way? Or is there another underlying issue going on with me? With that said, I have been seeing a gastro doctor and we are currently in the process of seeing what else is wrong with me.... I also need to see a rhuemotologist and I'll probably need IVF to get pregnant :(

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

There is currently no cure for C.F.

I have been admitted to the hospital multiple ( and multiple, and multiple) occasions to be "cleaned out" due to stool backing up in both my lower & upper instestines, causing me to be very sick. What happen's is at a normal check-up in Boston is- I get PFT's ( pulmonary function tests) done, a lot of blood work, a few x-rays, and the usual stuff with the doctor. But when I get admitted to the hospital, not only am I puking up pile and have the worst stomach pains you have ever felt in your life ( trust me ) I get all sorts of IV's, I cannot eat or drink my whole stay, I have to have pediatric tubes dropped down my nose into my stomach while they pump me with the fluids to clean me out. It is a miserable stay but when I leave I am 10 lbs lighter.

When I was thirteen I got to  make a wish.Make a wish is a foundation that grants one wish to a terminally ill child. It is a long & difficult process to get approved for, but once you are, you can wish for almost {anything}! Ofcourse being a G-I-R-L and being thirteen I wished to "go on a shopping spree." A limosine pulled up to my house at 9 am, I brought my mom, my aunt, and my cousin along with me. We got to walk through all the back halls of our local mall. Once the stores opened at 10 am, every store donated one item to me, plus I got to spend $2,000 total and I got to do Glamour Shots for free (pictures to come eventually.) It was a blast and a memory I will never forget <3

{ The above image was found on, painted by Amber Richter - "Make a Wish" } 

As of February of 2012 - The FDA approves Kalydeco, the first drug made to target the underlying cause of Cystic Fibrosis. Although it will only work for 4% of CF'ers (with a certain mutation of CF) this is a HUMONGOUS break in finding a cure for Cystic Fibrosis. Read the rest of the story here!!

1 comment:

  1. I'm not sure how I stumbled upon your blog, but this made me smile. My name is Amber, I painted that make a wish painting. I'm not sure if you realize this, but I made my make a wish because I have Cystic Fibrosis. That painting was for Lauren, the worker at the Make A Wish center in Ann Arbor. I believe it's in her office in Detroit now. Also, your not the only one who has struggled with wight. I have been on both sides of the fence, I eat a lower crab diet now, but it was hard getting use to it. You should join It's a great community. Keep up the good fight and I'm glad you liked my painting =)


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