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Answers to Questions
About Cystic Fibrosis
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Here to Ask Your Question |
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| What is Cystic Fibrosis?
Cystic Fibrosis is a genetic disorder that affects
approximately 30,000 Americans. This is a condition in which there
is a generalized dysfunction of the exocrine glands, the glands that
discharge their secretions through the skin, mucous membranes, and the
lining of hollow organs (such as the lungs). When sweat glands are
affected, perspiration is salty and profuse. When the respiratory
system is affected, thick secretions may fill the lungs, causing chronic
coughing. With digestive system involvement, food may be difficult
to digest and it may cause a blockage in the intestines. The
disease is hereditary, it may not be transmitted in any other way.
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| What organs does Cystic Fibrosis
Affect? Cystic Fibrosis causes the mucous within the body to
be very thick. This thick mucous affects the lungs, digestive
system, liver, and the reproductive system. The mucous in the lungs
causes the individual to be susceptible to lung infections, particularly
Pseudomonas and B. Cepecia. The pancreas is affected within the
digestive system. This causes CF'ers to have difficulty digesting
food properly. Due to this most individuals with CF take a
pancreatic enzyme. The liver does not work for some CF'ers,
particularly older individuals. The reproductive system in 98% of
males with CF is completely blocked by the mucous. Females also have
difficulty with their reproductive system, just not to the extent of their
male counterparts.
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| How is it treated?
Although there is no cure for CF, the earlier it is
diagnosed the better. Currently there are various treatments that
will allow the child to lead a more normal life. Many of
those affected by this disorder must take drugs and enzymes to thin the
mucous secretions, allow for better digestion, and to prevent
infections. They also must have a special diet and vitamin
supplements.
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| Are children with CF constipated a lot?
Children and adults with CF can be constipated. Pancreatic enzymes,
which are taken before every meal, allow CFer's to better absorb the
nutrition from the food they eat. This in turn has minimized the
constipation for CFers. Today, if a CFer is constipated, it is
usually due to an incorrect dosage of the enzyme.
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| What is being done to find
new treatments, or a possible cure?
The gene that carries CF was identified in 1989, since
that time many potential treatments have been in development. The
potential new treatments, or even the cure, include gene,
pharmacological, protein-assist
and chloride channel therapies
. These treatments are in various stages of
development. Each of these will hopefully lead to the cure for
this once fatal disorder.
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| What is the significance of the rose?
Although when we picked Rose for Gia's middle name it
did not have any meaning to us about CF, since then we have found out
how significant it really is. The story goes like this:
Mary G. Weiss became a volunteer for
the Cystic Fibrosis Foundation in 1955 after learning that her three
little boys had Cystic Fibrosis. Her duty was to call every civic club,
social and service organization seeking financial support for CF
research. Mary's four year old son, Richard, listened closely to his
mother as she made each call. After several calls, Richard came into the
room and told his mom, "I know what you are working for."
Mary was dumbstruck because Richard
did not know what she was doing, nor did he know he had Cystic Fibrosis.
With some trepidation, Mary posed the question back to Richard,
"What am I working for, Richard?"
"You are working for '65
Roses'," he answered so sweetly. Mary was speechless. She went over
to him and tenderly pressed his tiny body to hers. He could not see the
tears running down Mary's cheeks as she stammered, "Yes, Richard,
I'm working for '65 Roses'."
This legend has been popularized by
the Cystic Fibrosis Foundation (USA) in the names of fund-raising events
(e.g., Sixty-Five Roses Dance). But making it easier to say doesn't make
Cystic Fibrosis any easier to live with.....
The ugly fact is Cystic Fibrosis is
the number one genetic killer of children and young adults in America
today. The "65 Roses" story has captured the hearts and
imaginations of all who have heard it. The rose, appropriately the
ancient symbol of love, has become a symbol of the fight against Cystic
Fibrosis. .
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| How can I help?
There are many ways that one may help. The best
ways are educating others about this disease, volunteering, and
donating. There are many organizations that support the cause of
CF, but the one we recommend is the Cystic Fibrosis Foundation.
This organization is leading the way to find a cure for this
disease.
Click here to
make a donation in Gianna's name.
Click
here for a list of upcoming events, including various golf tournaments.
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