Osteogenesis Imperfecta.
Last updated Thursday, December 23, 2004
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Coping
Adaptive aids
People having difficulty walking due to frequent fractures or
various physical limitations may be more mobile using crutches, braces,
a cane, or a walker. Wheelchairs may be required by some people.
Therefore, it's important that excessive weight gain be avoided.
Other adaptive aids and medical procedures are particularly helpful
in increasing independence in daily activities and maintaining an
optimum level of health. Splints can help stabilize joints. Individuals
with hearing loss may benefit from hearing aids. People who have
fragile teeth should ask their dentist about capping their teeth early
to minimize wear and breakage. Dressing and bathing aids are available
through mail-order catalogs. Special reaching devices are available for
short-statured people to ensure that they can reach whatever they need.
Individuals with OI must naturally take extra safety precautions.
One highly recommended precaution is to wear a medical diagnostic
bracelet; it could be a lifesaver. At home, avoid using area or throw
rugs because they can cause slips and falls. Install and use handrails
on stairs and in bathtubs. Make sure counters and tables have rounded
corners. Keep hallways, stairways, and rooms well lit, using night
lights wherever necessary. Since even minor bumps or accidents can
fracture a bone, take precautions to avoid large crowds, unknowing
toddlers, or large dogs.
Aids for Children
Parents should lift and diaper infants with OI with care and be sure
to support their limbs at all times. Many parents successfully
transport their children on a pillow or a foam pad. Contact the Osteogenesis Imperfecta Foundation for more information.
If you have a child with OI, discuss the symptoms with teachers and
other caregivers so they will know that fractures are features of OI
and not signs of child abuse. Classmates should be educated to avoid
rough play with the child. Contact sports should be avoided. Although
OI does not affect intelligence, medical problems and disabilities may
present socialization or adjustment problems for children. If such
problems occur, try psychological counseling or family therapy.
There are special legal rights to education for children with
disabling disorders. For more information, contact the American
Juvenile Arthritis Organization, an organization concerned with the
issues of arthritis and related diseases in children.
Though children with OI need special protection, they also need to
play and have friends. Involve your children in activities they can
safely enjoy, and encourage them to be as independent as possible
(football or bicycle helmets are good safety precautions). Since hands
usually are spared from fractures, activities such as music, art, and
computers are good choices.
Resources
People who are severely affected by OI may need a great deal of
medical and financial help. Depending upon the severity of their OI,
such individuals may be entitled to receive certain government
insurance or disability income benefits such as Social Security
disability benefits, Supplemental Security Income, Medicare or Medicaid
benefits, free or partial-pay care, or general emergency assistance.
Contact your Social Security office or county welfare department for
more information.
Keep in mind that most people with OI have a normal life expectancy
and lead very productive lives. Most often they can attend regular
schools, enjoy a wide range of career and lifestyle choices, experience
fulfilling relationships, and have children.
- The Arthritis Foundation
- American Juvenile Arthritis Foundation (AJAO), a membership
organization of the Arthritis Foundation, 1314 Spring Street N.W,
Atlanta, GA 30309 (404) 872-7100
- March of Dimes
- National Organization for Rare Disorders (NORD), P.O. Box 8923, New Fairfield, CT 06812 (203) 746-6518 or toll-free (800) 999-6673
- Osteogenesis Imperfecta Foundation,804 W. Diamond Avenue, Suite 210, Gaithersburg, MD 20878, (301) 947-0083 or toll-free (800) 981-2663, bonelink@oif.org
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