Author: Lauren

 The newly built waterfront (top) and the disparity that exists justa few minutes away  On my H.O.P.E. trip we learned a lot about compassion, the shear opposite of pity. Putting yourself in someone’s shoes and feeling for them, not in the way that you are any better than them, but in the way that you are both equal as humans. At the beginning of our weeklong journey, I expressed the concern that I wouldn’t be able to respond to people because “I don’t understand what it’s like.” Sister Julie said something to me that I never forgot the rest of the week. She said that these people experience the same emotions we do, anger, fear, loneliness, hope, faith, etc. She said to think of a time you felt like that, and you’ll know what to say. This was such good advice and I found I knew what to say in many situations that week. Though I do believe that sometimes it is impossible to understand something unless you’ve been there, I learned that it IS possible to be compassionate with people and how they are feeling. For the rest of the week I didn’t look at the homeless people with pity at all. I looked at them as human beings with feelings just like my own. I got angry right along with them. I discussed with two...

For my spring break, I went on a H.O.P.E. trip (an alternative spring break service trip) to Camden, NJ, the #1/#2 (depending on the year) poorest and most dangerous urban area in the US. I was so completely changed by this experience that I don’t even know where to begin, so my blogs for the next few weeks will all probably focus on some aspect of my experience.We stayed at the Oscar Romero Center in East Camden. It is a retreat center for high school and college students in order to learn about the social injustices which exist in our world. We worked at a homeless day shelter, nursing home, adult day care, food pantry, and a house for HIV/AIDS patients. We also had people from Camden, whether they were priests, nuns, volunteers, or people who they themselves had lived on the streets. Each day I learned something new about myself, I laughed, I cried, and I became incredibly close with the group I came with. This was, hands down, the most life-changing week of my life. One of the first things I realized about myself in Camden is that just because I am someone with a life-threatening illness doesn’t mean I can just sit back and watch the world go by. Yes, I am someone who needs assistance sometimes, I always had volunteers coming in my room when...

A couple weeks ago, Grey’s Anatomy focused part of their episode on CF. (you can watch the episode here)There was a CF patient preparing for a transplant, but the doctors found out that he had a girlfriend who also had CF. This is a huge no no for CFers, as we have bacteria in our lungs that is only harmful to other people with CF. Therefore, there are guidelines set by CFF that we are only allowed to be within 3 feet from each other. For example: I may have bacteria that my lungs can handle or that I don’t even know I have, so giving it to another Cfer could be deadly, as they don’t know how their body will react. Though CF is usually portrayed in the wrong light whenever it is featured in shows like this or in movies, I was actually pretty impressed with Greys. They really hit the nail on the head with how frustrating it is for people with CF not to be allowed to hang out. I was talking with one of my CF buddies about this, and how hard it would be to refrain from hugging had we met each other. I have made great friends with others with CF, however our friendship only exists within the confines of the internet. Our only communication is online, and once and a while,...

Most of us have heard about the good news that Vertex released this month. They are seeking FDA approval for a drug that will drastically change the lives of about 4% of the CF population, those with the GD551D mutation. This is good news for a small percentage of people, but it offers hope for a large majority. Along with VX770, which works for the rare mutation, VX809 which works for double Delta F508 mutation (the one I and many other CFers have) is currently being researched both alone and in combination with VX770. The reason why the results have come out only for VX770 is simply because it was ahead of the research for 809, so I’m keeping my fingers crossed that promising results come out for us Deltaf508’s very soon! Hearing this news was overwhelming. When I first heard about Vertex’s studies a year or two ago, I was very, very hopeful, but also very, very weary. However, now that it is having such good results, A SUSTAINED 11% INCREASE IN PFTS and decrease in the saltiness of sweat to intermediate levels (a high level of salty sweat is the indicator for CF), I am blown away. When I read that article, I was overjoyed. This was especially emotional for me, because before I went to bed the night before, I was pleading with God to please...