42 THE QUEENS COURIER • WELLNESS • JULY 19, 2018 FOR BREAKING NEWS VISIT WWW.QNS.COM
Fortifi ed salt improves lives
Haiti has among the highest rates of
elephantiasis (lymphatic fi lariasis), which
attacks the lymphatic system, leading to
abnormal enlargement of body parts, disfi
gurement, pain, disability and social
Th e World Health Organization estimates
Families fi nd hope for rare genetic brain disorder
For most parents, their child’s fi rst steps
or fi rst words are incredible moments in
their lives and a reason to celebrate. Well
before their child is born they look forward
to these milestones.
Parents Mike and Lori Cecere looked
forward to watching their son Weston
crawl. Most babies learn between 6 and 10
months old; however, as the weeks passed
and Weston still had not hit this milestone,
the Ceceres grew increasingly worried.
Eventually, they went to a specialist.
Weston was diagnosed with Angelman
syndrome when he was 15 months old.
A rare genetic brain disorder, Angelman
syndrome aff ects between 1 in 12,000 to
20,000 people, and is characterized by
delayed development, cognitive disability,
severe speech and sleep impairments, and
problems with movement and balance.
At the time of Weston’s diagnosis,
those common milestones seemed distant,
maybe even impossible. His parents
were told he would never be able to walk,
and things that may seem insignifi cant
to most - something as simple as using a
straw - might be impossible for him.
Yet despite the odds and the diagnosis,
Weston learned how to walk. And though
it took his siblings just nine months to
learn how to use a straw, aft er fi ve and
a half years, Weston, too, was able to
accomplish this task. For families impacted
by Angelman syndrome, these are
more than milestones; they are victories
amidst lifelong challenges and emotional
What is Angelman syndrome?
A genetic disorder aff ecting the 15th
chromosome, Angelman syndrome
requires lifelong care for those who are
diagnosed, beginning when very young.
In most cases, the fi rst signs of Angelman
syndrome that parents notice are signifi -
cant developmental delays such as a lack of
crawling, lack of speech or - in some cases
- seizures. Because these symptoms can be
easily mistaken for other conditions such
as autism, cerebral palsy and Prader-Willi
syndrome, Angelman syndrome is frequently
Th ose with Angelman syndrome are
easily excitable, have short attention
spans and exhibit a generally happy personality.
Th ey also don’t sleep as long
as people without the syndrome, rarely
more than fi ve hours at a time, which
means family and caregivers struggle with
sleep deprivation on a regular basis.
One of the biggest challenges families
face is in trying to control seizures. It’s
hard to know just what will trigger a seizure,
which can become a source of constant
What treatments are available?
One of the fi rst geneticists the Cecere
family saw said that the best thing for
Weston to do would be to play with other
kids. With a neighborhood full of friends,
that’s just what they did.
It was not a cure, but combined with
love and expert treatment, it helped tremendously.
While there is currently no cure for
Angelman syndrome, researchers are
working on medicines to target specifi c
aspects of the disorder. For example, therapies
that could help with balance and
coordination could help someone walk
further on his or her own.
For the Cecere family, a therapy that
helps Weston achieve even more small
victories - like taking an extra few steps
or being able to point - could have a
major impact on how he interacts with
It’s these small changes that can have
a big impact and open doors for children
like Weston to do the things many
thought they would never do.
Sponsored by Ovid Th erapeutics.
that 856.4 million people in 53
countries remain threatened by elephantiasis.
Th e Haitian population also suffers
from widespread iodine defi ciency.
Th e Haitian Ministry of Health has established
a goal to completely eradicate elephantiasis
and iodine defi ciency disorders
in Haiti by 2020. Fortunately, there is a
simple cure for these conditions: salt fortifi
ed with iodine and diethylcarbamazine
Iodine is an essential element for healthy
human life, enabling the function of thyroid
glands to produce needed hormones
for proper metabolism. When children in
the womb don’t get enough iodine from
their mother, fetal brain development is
impaired. During pregnancy, iodine defi -
ciency can cause a child to develop learning
and intellectual disabilities as well as
developmental problems aff ecting speech,
hearing and growth.
“Iodine defi ciency disorder (IDD) is the
single greatest cause of preventable mental
retardation,” says Kul Gautam, the former
deputy executive director of UNICEF.
“Severe defi ciencies cause cretinism, stillbirth
and miscarriage. But even mild defi -
ciency can signifi cantly aff ect the learning
ability of populations. Scientifi c evidence
shows alarming eff ects of IDD.
Even a moderate defi ciency, especially in
pregnant women and infants, lowers their
intelligence by 10-15 IQ points.”
Kiwanis International, a worldwide
service organization in more than 82
nations and geographic areas, partnered
with UNICEF in a global eff ort to eliminate
iodine defi ciency disorders (IDD).
In just 10 years, starting in 1990, the percentage
of the world population consuming
iodized salt went from 20 percent to
70 percent. Kiwanis ultimately provided
nearly $105 million to protect children
from preventable mental and physical
“Th ere is no reward greater in life than
helping children, and seeing them live
healthy, vibrant lives. Our clubs and
members understand the importance of
helping children in their communities,
and in communities around the world,
and have proudly contributed to protecting
more than 80 million children from
the devastating eff ects of iodine defi ciency,”
said Stan D. Soderstrom, executive
director of Kiwanis International, during
a Kiwanis sponsored presentation at the
2018 World Salt Symposium in Park City,
Iodine defi ciency was a problem in the
United States as well, until American salt
producers started adding iodine to table
salt more than a century ago. Today,
about 70 percent of the table salt sold
in the United States is iodized. In fact,
salt has been and remains the primary
source for iodine in the American
diet. Th e eff ect of this public health initiative
has been to virtually eliminate
the incidence of thyroid related illness,
including goiters. “Iodized salt has been
one of the greatest and most economical
public health successes and it continues
to help raise healthy, smart children,”
said Lori Roman, President of the Salt
Institute, which hosted the 2018 World