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The Situation
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Treatment of a child with OI (osteogenesis imperfecta)
incurs high expenses due to:
- medical appointments (pediatrician, orthopedist, pediatric
endocrinologist, dentist, ENT specialist)
- medicines (biphosphonates, analgesics, vitamin and mineral
supplements)
- mechanical and correctional equipment (devices for legs, special
chairs and seats, walkers)
- surgery
- post-surgery rehabilitation
weekly physical therapy advice
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In developed countries with enough medical and social resources, the
national health care system usually covers some, if not all, of the
expenses.
However, many children with OI have been born in
countries where national health care is limited or outright
nonexistent. Their quality of life and physical and intellectual
development possibilities depend on medical treatment. Unfortunately,
the financial support of this treatment is the exclusive
responsibility of their relatives.
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Raquel Camacho
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Some families in countries lacking a national health
care infrastructure can in fact afford treatment of their children. They
can pay for medicines, surgery and physical therapy. Sometimes they can
even allow themselves the luxury, by making a lot of sacrifices, of
regularly taking their child abroad in search of a physician who can treat
and help him.
Unfortunately, those cases of families that are better
off are the exception. In countries without state-run health care, the
majority of children with OI lack treatment, such as:
- physical therapy
- medication
- an adequate diet,
- wheelchairs or other mechanical equipment
- analgesics to relieve pain
These children are condemned to progressive deformity
and permanent pain. Too often governments take no interest in the physical
situation or schooling of these children. In those cases they end up being
treated as pariahs, making a bad situation even worse.
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E-mail: padrinos@osteogenesis.info
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