Pearl Lewis
Atypical HUS has stricken my family for four generations
that we are aware of – my two children, now adults, their natural mother who
died 3 weeks post partum and her mother.
In 1966 when N. R. L. was 28, 3 weeks after giving birth to her
fourth child, and with an 18 month old, a 4 and 6 year old she died. They said
it was schleroderma of the kidney. In November of 1967, at the age of 21, I
married their father and became the mother of 5 children under age 7. In a few
years there were six children. All was well until 1988 when my daughter came
home from her junior year in college spent in Spain. She appeared to have the flu but on going to the doctor her
labs indicated acute hemolysis and renal failure. A biopsy diagnosed atypical
HUS and when the slides were compared to those of her mother at NIH, the diagnosis became
clear as did her mother’s who died in the 1950’s of what they had called
Bright’s disease.
Her older brother sat at her side and prayed that she
would get well and even said let it be him. In 2 years it was but he was not as
lucky as his sister. After only 6 months on dialysis she regained kidney
function, was able to go back to school, graduate, work on Capitol Hill, move
to
Her brother has been on dialysis for 15 years. After a
transplant that lasted from 1992-94 that kidney failed, his wife put him in an
ambulance and sent him to live with his parents. The divorce followed shortly
after. In 1996 he tried for another kidney but the disease recurred, he was
hospitalized for 6 weeks, was on a ventilator and almost didn’t make it.
Dialysis has taken its toll and he underwent a quintuple bypass; had his
parathyroid removed and lives with Hepatitis C caused by multiple blood
transfusions. He has attempted to work, was able to buy a house and car. He is,
and has been a fighter but the toll on him, his family and the economy has been
great. If anything this disease condemns all those it touches to a life of
uncertainty, pain and frustration.
Between my two adult children, their, medical bills have
cost the government in excess of $3M and it will escalate. What have I done to
address the situation? My children are adults, all I can do is try and make
sure others have access to care, that research begins to address this dread
disease that will continue to cost this nation billions of dollars for treatment
for want of lesser amounts dedicated to research. To continue to spend on
treatment, treatment that is enormously expensive, treatment that impacts on
one’s ability to live a normal life, and not address the cause and ultimate
cure of this disease is penny wise and pound foolish.
End stage renal disease is
the one condition that the federal government has dedicated an entire program
to because it is life saving, because the treatment is so expensive costing
this country $20 B per year. To allow these children to face a life of dialysis without
hope of something better is cruel. A life without hope, a life with only dialysis in
its future is not a life anyone of us would want for ourselves. How can we
condemn others to this reality?
Our only hope lies in research, in identifying a
treatment that will correct the genetic flaw lying within each cell. There are
scientists who understand the mechanism behind the flaw; they only need the
necessary funds to underwrite the research that must be done.
Do we spend billions to sustain our children in limbo, in
a reality that none of us can call a full, rewarding, normal existence or do we
dedicate, as the first step, several hundred thousand dollars in an effort to
purchase hope, hope of a life that approaches some semblance of normalcy?
We must take the first step. To do anything less is to
continue to do nothing, to continue to support the status quo, to continue to
support the misery that is atypical HUS.
Please join us as a partner in hope.