Aveneu Park, Starling, Australia

There the United States that are affected by Cystic

There are about
30,000 children and young adults in the United States that are affected by
Cystic Fibrosis and half of these people will only live to about the age of 40
(Fallon, 2013). Fundukian (2010) defines Cystic Fibrosis as a disease that is
inherited, and it impacts people’s lungs, digestive system, sweat glands, and
even affects male fertility.  Cystic
Fibrosis derives its name from the impact that it causes on the fibrous scar
tissue in the pancreas.  There is no cure
for this disease and about only half of people born with this disease will live
past 40 years old.  The most extreme
symptoms of this disease can be found in the digestive system and the
respiratory tract.  Some of the symptoms
involved in the digestive system are heartburn and severe constipation.  Pulmonary hypertension, shortness of breath,
sinusitis, or wheezing are symptoms involved with the respiratory system due to
this disease.  Some other common symptoms
include coughing up blood, fatigue, acute bronchitis, deformity of nails,
infection, male infertility, nasal polyps, pneumonia, salty sweat, or weight
loss.  These symptoms cause serious and
rapidly progressing health issues for the people with this disease, which
explains why the average life expectancy is so low.  However, organizations, such as the Cystic
Fibrosis Foundation, are working toward more developed research and a cure, if
possible, in order to improve and extend lives. Research about this
disease impacts the fate of 30,000 people each year with Cystic Fibrosis.  According to Ferrara (2010), Cystic Fibrosis
used to always be fatal in early childhood, but treatments in the last few
decades have allowed many people with Cystic Fibrosis to live longer.  Some symptoms are mild, but some of the
symptoms are more severe, such as the reappearing infections in the lungs.  These infections continue to damage the
lungs’ ability to function, which makes this a fatal disease.  Ferrara (2010) continues on to say that in
the 1990s and 2000s lung transplants had been performed on patients with severe
lung disease. The Cystic Fibrosis Foundation reports that about 120 to 150
people yearly receive lung transplants in the United States. Only 90 percent of
people with these lung transplants are alive after a year and 50 percent are alive
after five years. Lung transplants are rare, and these transplants for Cystic
Fibrosis victims do not last very long.  Finding
a cure or treatment can allow these lungs to be used for others who need them
and who do not have an infection that keeps attacking the lungs.  According to the Cystic Fibrosis Foundation,
the average life expectancy of people with Cystic Fibrosis was about 36.5 years
in 2008, an increase from 32 years as of 2000. So, even with lung transplants,
those solutions are temporary, as infections will destroy the organs, so even
more research must be done to increase life expectancy, since this disease has
one of the lowest life expectancy rates. This disease is
caused by a mutation on chromosome 7. 
This mutated gene causes a lack of protein that is necessary for the
amino acid phenylalanine.  Without
phenylalanine, the body is not able to obtain the correct amounts of water and
salt.  When this happens, the respiratory
and digestive systems become clogged. 
This makes it difficult to breath and it will increase the chance of
infections in the lungs.  The body
doesn’t get enough food because the digestive system won’t receive all the
nutrients the body needs. 
            A carrier of this disease only
carries one of the two copies of chromosome 7 and does not face any of the
symptoms as a person with both copies of this chromosome.  If a person inherits both copies of the gene
from their parents, then they will develop Cystic Fibrosis. If both parents are
carriers of this gene, then the child would have a one in four chance of
developing Cystic Fibrosis.  There are
currently about 10 million carriers in the United States, which shows that
about one out of thirty people carry this gene, so it is important to conduct
research on a disease that has a significant probability to surface and affect
the population.            The
Cystic Fibrosis Foundation is a non-profit organization that provides research
in finding more effective treatments and a cure for Cystic Fibrosis. Also, this
foundation uses part of the funds they receive to help treat patients.  In the last five years, this foundation has
received an increase in funds of about 15 percent.  In 2017, they received the most funds in their
foundation’s history, which was 181 million dollars.  According to the Cystic Fibrosis Foundation’s
website, in 2017, they spent 38.6 million dollars on clinical research, 95.7
million dollars on laboratory and preclinical research, and the remaining 46.9
million was spent on patient care.              All
of this funding over the last few decades has led to substantial advancements
in finding more effective treatments for Cystic Fibrosis.  According to their website, the research they
have funded so far has allowed them to develop ten new drugs to treat patients
with Cystic Fibrosis.  Part of this
research includes researching  mucus,
inflammation, gastrointestinal complications, related diabetes, lung
transplants, RNA therapy, and rare mutations. 
In 2016, they used
4.4 million dollars in the search for a cure. 
Out of this money, 32 percent of it went towards research stem cells, 50
percent went towards researching gene editing, and 18 percent went towards
researching gene delivery.             The
Cystic Fibrosis Foundation has care centers for these patients throughout the
United States and worldwide. According to their website, they have guidelines
at these clinics to help people find the right treatment for them.  These guidelines are used based solely on the
foundation’s medical research, so that you these patients are given the best
care possible.  The Cystic Fibrosis
Foundation’s guidelines suggest that people ages 6 and older come to the care
center about four times a year.  They
will receive four sputum cultures and perform at least two pulmonary function
tests in these 4 visits a year.  There are more annual
guidelines for these patients however. 
They will monitor patients health and they will help the patients to
develop and revise their treatment plans. This foundation says that tests are
taken so they can detect small changes in the patients health before small
problems become bigger problems.  If
there are any emerging conditions, then patients will need to schedule shorter
follow-up visits to monitor the condition.
            A typical visit to a care
center might consist of the following: measurement of your vital signs,
measurement of your temperature, blood pressure, height and weight.  It is crucial to measure the patient’s height
and weight because it allows them to calculate the patient’s body mass index
and determine your body composition. Calculating the body mass index and body
composition is crucial in order to compare growth, nutrition and digestive
function in people with Cystic Fibrosis to people without Cystic Fibrosis. This
helps the care center to figure out how well the patient’s treatment plan is
working.  They will also check
the patient’s vitamin levels, indicators of liver disease, indicators of
diabetes, indicators of infections, how your body is responding to an
infection, whether you have the right amount of certain medications in your
system, and side effects from medications. 
Blood samples are taken to a laboratory to be tested and analyzed by the
care centers staff.  These results
determine if your treatment plan will change. 
Here are some other
things they will test during a visit. 
They test the lungs to measure how well the lungs are functioning.  They consult the patient about their diet and
test the digestive system to make sure it is functioning properly. Lastly, they
consult you on your emotional well-being to make sure it is just normal stress
the patient is dealing with.

In conclusion, Cystic Fibrosis is a serious disease that
affects 30,000 people in the United States. 
Cystic Fibrosis is caused by a mutation found on the gene of chromosome
7.  This disease affects the respiratory
system and the digestive system.  The
symptoms involved in the digestive system are heartburn and severe
constipation.  Pulmonary hypertension,
shortness of breath, sinusitis, or wheezing are symptoms involved with the
respiratory system.  The other symptoms
include coughing up blood, fatigue, acute bronchitis, deformity of nails,
infection, male infertility, nasal polyps, pneumonia, salty sweat, or weight
loss.  There has been significant funding
over the last few decades, which has helped to provide better treatments for
these patients with Cystic Fibrosis.  The
Cystic Fibrosis Foundation spent 181 million dollars in 2017, which is the most
they have ever spent.  The average life
expectancy of a person with Cystic Fibrosis has significantly increased in the
last few decades and is now estimated at 40 years old due to all of this
funding over the last few decades.  The
Cystic Fibrosis Foundation also provides care centers not only in the United
States, but worldwide.  These care centers
are used to help develop treatments plans specific for each patient based on a
set of guidelines.  They run tests and
provide treatments for these patients, so that they live the longest life
possible.  Therefore, the Cystic Fibrosis
Foundation is actively working toward more developed research and a cure, if
possible, in order to improve and extend the lives of patients that have this
life threatening disease.  

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