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Progeria
Sunday, November 13, 2011
Saturday, November 12, 2011
12. How possible is it that a cure will be found?
For right now there is no diagnostic for this disease. Ever
since researchers found the Progeria gene many of them have been hopeful in
finding the treatment for this disease. Many of them are working as hard as
they can to find the cure.
11. What are some organizations that can help a family cope with a child's disorder?
One of the most well known organizations is the Progeria Research
Foundation; they fund research for Progeria and they help fund chapters throughout
the country. You can learn more about them at their website progeriaresearch.org.
Progeria.be is also an organization that helps families with Progeria. It
provides information about other families with this disease and assists you in
finding more information about this. You can learn more about them at progeria.be/index_EN.php.
There is also an association called Genetic Alliance, and they work in the area
of genetics. They offer a one-on-one assistance to help individuals and
families create support groups and help you with many things. You can find out
more information about them at geneticalliance.org.
10. What is everyday life like? What is the quality of life?.
A child with Progeria does many things that many of us do,
but they have some restrictions and they have to live life a little more
carefully. They must stay well hydrated, for them to be dehydrated could cause a
lot more of a problem to them than normal people. They should have more
frequent meals; bringing in more nutrition more frequently can be better for
them. They should be active, and try to stay healthy; some sicknesses can be
more harmful to them. Other than those things, they are mostly like us.
9. How can the disease be treated?
Progeria still does not have a cure, but the Progeria
Research Foundation (PRF) is working very hard to fund developing treatments to
help cure it. Some can receive drugs to help with some of the treatment; they
could take aspirin or a prescription from their doctor. Some children may go to
a physical therapist to help with their joints and hip stiffness. Scientist are
looking at a treatment called farnesyltransferase inhibitors (FTIs) that have
seemed to help correct some of the defects in the cell with Progeria. This
treatment was made to help treat cancer, but is now being tested for Progeria. PRF is also working on clinical drug trials
that will help the children involved in this, live longer and better lives.
8. What is the life expectancy of someone with the disease?
Children with Progeria seem to be normal at birth, but
around 12 months they seem to have more symptoms. Most children diagnosed with
this disorder live to be around 13 years old. Some live to be 20, but some don’t
even live to be 13.
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