Skip to main content

A little unsettling

If you have kept up with CF research in the past couple of months, you know it has taken us on an emotional roller coaster. With the development of Kalydeco, a drug used to counteract the effects of Cystic Fibrosis in patients with a specific mutation, much hope has been bestowed on the CF community. Currently, clinical trials are being done with a combination of medicines to treat the cause of CF in patients with the most common mutation.

Well, the FDA has recently asked Vertex Pharmaceutical Company (the company that makes Kalydeco) to conduct a study to check for possible additional risks to taking the medicine. In a lab study, juvenile rats treated with Kalydeco developed cataracts. Although this problem did not occur in humans during their studies, the FDA is requesting further testing to be done. Right now, it is still recommended that patients using Kalydeco continue with their medical regimen until further data and information is provided. Click on this link to see the story on the Cystic Fibrosis Foundation website.

I wish the race for the cure was going absolutely perfectly and efficiently. I wish I could be part of one of these historic studies. I wish I was cured right now! But for now, I am going to have to trust God and learn the act of patience. What a hard art to learn...


Popular posts from this blog

Exciting news!!

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes!

Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because CF…

CF limits

I was always told I could do anything.

That CF couldn't stop me.

That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal".

I'm finding out now that's not necessarily the case.

Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pathology.…

The false narrative

Today I was at church with my parents. After the baby dedication, the pastor prayed over the families. It was a fine prayer until he said something along the lines of "raising kids in a Christian home is the best way to ensure kids grow up healthy". This is when I opened my eyes and tuned out the rest of the prayer. Honestly, this is where I tuned out the rest of the service. This false narrative is exactly why American Christianity can be so out of touch with the world.
No. No. No. This is not how God works. Yes, in a world without struggle and pain and heartache, I wouldn't have cystic fibrosis. But in our current, broken world God uses illness and weakness to prove His strength and power and love. If God wanted to heal me, I have full confidence that He could and that He would. I know there are people who have experienced divine healing. But in many cases, God uses our weaknesses rather than spontaneously healing us. In 2 Corinthians 12, Paul says, "But He (the Lo…