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I was diagnosed with a genetic disease known as Cystic Fibrosis when I was 18 years old. It has now been nearly 5 years since I was diagnosed with the disease. I was in my senior year of High School when I was diagnosed; most people with Cystic Fibrosis are diagnosed when they are born or shortly after. I remember being very sick for a few months leading up to my diagnosis. I was in and out of the hospital once a month for pneumonia and was on various oral antibiotics every two weeks for months before being diagnosed with Cystic Fibrosis. The day that I finally found out what was wrong with me my entire life was a relief, but at the same time, I was afraid for my future.
I had been experiencing symptoms of Cystic Fibrosis for my entire life. Most of my symptoms were passed off as either severe allergies or asthma by any doctor that I saw. By the time I was diagnosed with Cystic Fibrosis, I had sustained a lot of irreversible scarring to my lungs. Since being diagnosed with Cystic Fibrosis, I receive all of my treatment at the University of Michigan hospitals. I have multiple doctors in various specialties. Between each of these doctors, I usually have an appointment once a month on average for something related to my Cystic Fibrosis. Every day, I have to do an airway clearance vest for 20 minutes minimum twice a day. This is when I am not sick with pneumonia, if I am sick it goes up to around 3 or 4 times a day. I also do a nebulizer along with my vest to inhale three different medications to help me clear the thick mucus from my lungs. This is an attempt to help me not get pneumonia as often. Those of us who have Cystic Fibrosis always grow various types of bacteria in our lungs because the thick, sticky mucus is the perfect breeding ground for bad bacteria to flourish. I also take many medications every day and do a supplemental feeding tube at night while I sleep just to help me gain and maintain my weight. This is because I can’t eat enough during the day to do so on my own. Many people with Cystic Fibrosis end up needing a lung transplant by the time they are 35 years old; however, this prognosis is changing. There are new medications that are being released that have changed the course of the diseases and altered the lives of those of us with Cystic Fibrosis drastically.
I believe that regardless of the medical condition you have, or any hardships in your life that you may face, you can do what you desire in your life. I used to feel as though I would never be able to achieve anything in my life because of the toll that the disease takes on me every day. But with all of these new medical advancements, my life has changed for the better. I know many other people with Cystic Fibrosis who are angry because they have the disease and they will take it out on others who also have Cystic Fibrosis. The online Cystic Fibrosis community can be very toxic, but it doesn’t need to be that way. They will sit there and harass each other for everything, almost as if they are jealous when someone isn’t as sick as they are. Two people with Cystic Fibrosis are not allowed to meet because we risk spreading the bacteria in our lungs to each other. This could potentially make each other very sick. Therefore, the only way we can communicate is through online groups and chatrooms. Despite the toxicity in the Cystic Fibrosis community, there are many of us with the disease that is excelling in life. This is despite all of the hardships that come with having a progressive, terminal illness. The ones who are successful in their lives are inspirational to me because they show me that despite having a progressive, terminal illness, it is possible to do what I want in my lifetime. As long as I put the effort in that is required to do so and continue taking care of myself. They don’t dwell on the fact that they probably won’t live as long as the average person. I believe anyone, especially those who have a chronic illness, should have someone to look up to who inspires them to achieve all of their goals. Everyone in the world needs to make the best of the time that they get to be alive.
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