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to donate to Breathing Room
Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
cfmessageboard.com to connect with members of the CF
community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
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The Challenge of Life with Cystic Fibrosis
Until the last decade, the average life expectancy of persons with CF was 12
years of age. Improved treatments have increased the average life
expectancy
to 31 years, and as a result, there is now a first generation ever of people
who have survived into young adulthood with CF. However, CF remains largely
characterized and understood as a childhood disease. As a result, the
experience and needs of CF adults are not well understood within the CF
community, among medical professionals, or by the community at large. The
emotional and social impact of the disease in young adults is not yet well
understood by the medical community. And because the disabling effects of
the disease progression are not obvious (extreme shortness of breath,
weakness, wasting, other organ failure), the public often misinterprets the
difficulties with which CF adults must live.
In addition, CF presents a challenge unique among life-threatening diseases
where there is little or no restriction in mutual support provided by
face-to-face community. People with CF are vulnerable to lung infections
that can be communicated through casual contact. Protocol for prevention of
cross-infection limits contact among people with CF and prohibits contact
with those patients who have Cepacia or MRSA, both of which are resistant to
all antibiotics. So unlike people with other terminal illnesses who can
easily meet and spend time together, people with CF have to find other means
of self expression, mutual support, and community. The creation and
exhibition of Looking Glass has helped fill this void for many young adults
with CF and their families.
Next: Self-Expression and Candid Communication
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