Congenital Insensitivity to Pain with Anhidrosis(CIPA) is a disorder
characterized by insensitivity to pain, heat and cold, and anhidrosis.
Having children with this disorder made me realize that pain
and sweat, which are uncomfortable for normal people, have important
protective functions in ourlives.
When young children with this disorder develop teeth, they often
bite off their tongues or fingers, and aggravate injuries, burns,
dental cavities or bone fractures without being aware. CIPA patients
usually suffer from intellectual or hyperkinetic disorders, making
medical treatment of injuries especially difficult. They are
not likely to rest or protect areas affected by these injuries.
In some cases, fatalities occurring from hyperthermia in summer
and hypothermia in winter are attributable to the inability to
control body temperature.
We were devastated when our children were diagnosed with CIPA,
being told that "there are only a few cases of the illness in
Japan", "no sensitivity to pain and no sweat", "no cause of illness
clarified yet", and "no remedy found yet". After we calmed down
from the devastation, all of us realized that we had no idea
at all how we would cope with and confront this.
We brought up our children, who are misunderstood by society,
while groping in loneliness.
In 1993, three families including three patients from the Kanto
district of Japan (seven prefectures including Tokyo) started
a group named "Tomorrow", with the Japan Association of Patients
Thanks to "Tomorrow", we have met other parents, who are truly
able to empathize as they face similar problems and suffering.
Valuable advice - often concrete and effective information -
and sympathetic companionship have eased our burden considerably.
We are fortunate to have the outstanding support and cooperation
of many specialists including doctors, welfare officers, psychologists,
physical therapists, teachers, other parent groups, and volunteers.
Their assistance has enabled the Tomorrow group to conduct annual
symposia, provide annual medical examinations and publish handbooks
for people dealing with CIPA.
In the beginning of the 21st century, with the assistance of
the Japanese Government's Ministry of Health, Labor, and Welfare,
we have developed guidelines and videos to help children improve
their quality of life and create a more pleasant society to live
Please support our children's "Tomorrow".