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When a family member has a
disease, everyone has th e
disease.
My name is
Pearl Lewis. My goal - TO HELP FAMILIES WITH CHRONIC OR
END STAGE RENAL DISEASE. Whether you, your child or your
spouse has kidney disease I hope this site will answer
some questions. This series of articles addresses issues
both for the adult and the child with kidney disease.
The links will take you to sites for both patients,
parents and children with kidney disease. If there is a
question you need answered or a resource you need
identified please email me at the link below.
From where does this information come? From a patient, a
caregiver, a widow, the mother of 6, several with
chronic health conditions, two with atypical hemolytic
uremic syndrome; as the founder of two non-profit health
agencies, the Crohn's and Colitis Foundation of Maryland
and the Maryland Patient Advocacy Group, a health
advocate, a lobbyist both in my state capital and in
Washington. From serving on the Board of Directors of
the National Kidney Foundation, Maryland Chapter, the
Maryland Patient Advocacy Group and as Director of
Patient Advocacy and Government Relations for the
Foundation for Children with Atypical Hemolytic Uremic
Syndrome. From the former National Director of Patient
Advocacy and Government Relations for the Crohn's and
Colitis Foundation of America. From a member of the
Baltimore Coalition of the National Kidney Disease
Education Program and Co-Chairman of its PCP/Dialysis
Committee under the Auspices of the National Institutes
of Diabetes, Digestive and Kidney Disease of the NIH.
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Elie Weisel said
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" The opposite of ignorance is not
intelligence, it is indifference.
The opposite of
beauty is not ugliness it is indifference. The opposite
of culture is not vulgarity it is indifference. The
opposite of life is not death, it is everything that
makes life and death unbearable."
Chronic illness
can be bearable; but only when one is knowledgeable
about his or her disease, its symptoms, treatments, and
consequences of both. Education allows one to be
actively involved in one's wellness and lessen the pain
and frustration that comes with chronicity. Education
allows one to identify that which is, and is not,
controllable and to effectively manage life.
The key to wellness is the development of a therapeutic
alliance with one's physician and healthcare team. That
depends on the ability to communicate openly, one with
the other in an atmosphere of respect. If that does not
exist you are not dealing with the right medical
professional.
Questions? Send an e-mail
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