34 THE QUEENS COURIER • JULY 18, 2019 FOR BREAKING NEWS VISIT WWW.QNS.COM
wellness
One woman’s struggle with sickle cell disease and 3 things she wishes you knew
When Tosin Ola was a baby, she cried
a lot. It wasn’t because she was hungry or
cold. Tosin cried a lot because of something
much worse, and her parents had
no idea what it was. Th ey thought she was
simply a cranky toddler.
But Tosin was not a cranky toddler.
Instead she was a child with sickle cell disease
(SCD).
A grim diagnosis
Tosin was born in Nigeria, a country
without infant screening for the disease at
the time. SCD, a lifelong, inherited blood
disorder, impacts the fl ow of blood and
oxygen to the body due to a genetic mutation
that leads to the damage and destruction
of red blood cells. Th is causes chronic
anemia, leading to fatigue, and infl ammation,
leading to severe pain. Over time,
the cumulative eff ects of living with this
chronic disease can cause organ and tissue
damage, stroke and premature death.
People with SCD typically live until their
mid-forties.
Tosin learned this early on. She was not
diagnosed with SCD until the age of 4
when her parents took her to a military
hospital. Th e prognosis was grim, with the
doctors telling her parents that she would
likely die in childhood.
Tosin was in the room during this conversation
and the rage she felt at hearing
her own predetermined fate motivated
her to fi ght to live. With her family, she
moved to the United States a few years
later, where she was hospitalized once or
twice a year for bouts of severe pain during
her childhood.
Finding a voice
It was a hospitalization in 2005 that
changed Tosin’s life. She had been in
the hospital for two weeks, and as the
only person in her family with SCD, felt
very isolated. As she looked for resources
online about self-management of SCD,
she found nothing. Tosin knew that had
to change, and from her hospital bed she
started Sickle Cell Warriors, the largest
online patient-run community for SCD
in the world.
With the support of her family, and in
particular her mother, what started as a
simple blog now has more than 22,000
members around the globe, and it all
started with a woman who followed her
voice.
Continuing to teach
Th ese days Sickle Cell Warriors is larger
than ever, but Tosin, a registered nurse
and mother of twins, never passes up the
opportunity to share information about
SCD with anyone who will listen, including
rideshare drivers. For those who know
very little about the disease, Tosin says
these are the three most important things
to know.
1. You can help eradicate the disease
just by fi nding out if you have the trait.
An SCD test is not run on adults unless
you ask for it, but you can request it as
part of your annual blood work. While it’s
most common among people of African
descent, SCD can also aff ect people
with Latin American, Mediterranean or
Middle Eastern heritage, no matter how
distant the genetic link. If you do have
the trait, educate yourself on how you can
avoid passing the trait or the disease on to
the next generation.
2. SCD patients are not pain medication
seekers. Tosin likens the pain to prolonged
episodes of throbbing, deep pain,
similar to when you break a bone or have
a severe migraine. Tosin was in labor to
give birth for 12 hours before she realized
it, as it paled in comparison to an SCD
pain episode. Th ere is no approved treatment
for the underlying cause of SCD so
many patients end up in the emergency
room during pain episodes. As an “invisible”
disease, the lack of objective methods
to measure pain means that emergency
room staff are oft en skeptical and assume
SCD patients are addicts. Tosin has faced
disbelief and judgment while trying to get
help, to the point where she sometimes
avoids the emergency room. At these
times, she prefers to suff er at home than
deal with the staff which can worsen the
long-term damage of the disease.
3. SCD is more than just pain. While
pain is commonly associated with SCD,
pain is just one of many symptoms of the
disease. In addition to the pain, the ongoing
shortage of red blood cells leads to
chronic hemolytic anemia which causes
a cascade of symptoms including hypoxia,
vascular injury, progressive end-organ
damage and premature mortality. Tosin
suff ered strokes as a child, is prone to
jaundice and infection, and has necrosis
in her hip due to ischemia, which will
require the replacement of both hips in
her late thirties.
Moving forward
Tosin’s SCD is a part of who she is, but
she is quick to point out it isn’t all of who
she is, nor should anyone with SCD be
judged based on their condition. “We are
regular people just living our lives,” she
said. “We aren’t always the patient in the
bed.”
Instead, they are warriors with a mission.
To learn more about the Sickle Cell
Warriors, visit www.sicklecellwarriors.
com.
Courtesy BPT
/www.sicklecellwarriors
/WWW.QNS.COM
/www.sicklecellwarriors
