Chairwoman Jones and members of the Senate Medicaid and
Health and Human Services Committee; I would like to thank all of you
for allowing me to testify today and personally thank both Senator,
Cafaro and Schiavoni for introducing Senate Bill 128 to the Ohio
Senate; nominating May 30th as Bartter Syndrome (BS) Awareness
Day.
BS is a rare genetic kidney disorder that renders the human body
incapable of absorbing Potassium, Magnesium and Calcium. The
damage caused by BS on a cellular level adversely affects the body and
damages the immune system, muscle growth, and neuronal function. BS
often results in intellectual disabilities, short stature, vomiting, muscle
spasms, hearing impairment, frequent urination and thirst, and can lead
to renal failure or cardiac arrest.
Daniel and Liliya Hoffman started a non-profit organization
termed, the Bartter Syndrome Foundation a few years ago after their son,
Ethan was diagnosed with BS. The foundation financially assists
families struggling with BS, raises money for research, and offers family
assistance programs.
Ethan was undiagnosed for years and faced complications twice
due to misdiagnoses and lack of support and education. The general
public and the medical community does not encompass an abundance of
support and information relating to BS, and it's because of this lack of
education and support that people like myself and the Hoffman’s have
taken it upon ourselves to be proactive and educate the general public
about this disorder.
One out of a million people are affected by this rare disorder,
roughly 300 in the US and over 7000 worldwide. It is our theory that this
number is much higher, but due to lack of awareness and advocacy; this
disorder is often left undiagnosed and not reported.
I am here today to show people that have this disorder or know
someone battling this disorder that they're not alone. So few people
share their personal story, so few people have something to relate to.
Our aim is to promote advocacy and increase awareness for bartter
syndrome; offering education, support and hopes of finding a cure.
I ask the members of the Senate Medicaid and Health and Human
Services Committee to join us in recognizing May 30th as Bartter
Syndrome Awareness Day. This is an important time during which the
BS community will help increase the awareness of this devastating
disease, as well as supporting research to improve treatments, find cures
and receive early diagnosis. On May 30th, BS families are encouraged to
reflect and support each other and to reach out to those families who
have lost loved ones to BS.
I would like to thank the committee again for the opportunity to
share my story and to voice my support for May 30th as Bartter
Syndrome Awareness Day. Thank you very much.
Respectfully,
Peri Levengood
On behalf of the Bartter Syndrome Foundation