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Orlando twins talk about living with sickle cell disease in effort to spread awareness

Jaleel, Jabari Simmons share story

ORLANDO, Fla. – You wouldn’t be able to tell behind the smiles that Jaleel and Jabari Simmons suffer from sickle cell disease.

The twins were just babies when they were diagnosed and now that they are 20 years old, they want share their story and spread awareness.

“Since coming here to Nemours and having the doctors and nurses helping us, I say it’s been pretty good,” Jaleel said.

Others might also call it sickle cell anemia, which is a blood disorder of the red blood cells.

According to Nemours Children’s Health, red blood cells normally look like round discs. But in sickle cell disease, they’re shaped like sickles, or crescent moons, instead.

Dr. Dorothea Douglas-Lindsay with Nemours Children’s Health has been taking care of the Simmons brothers for years.

She explained those who have the disease experience pain crisis, other complications, and they also have a shorter life expectancy.

“They have something called a pain crisis or Vaso Occlusive Crisis and what always breaks my heart is this can start at 9 months of life so before Jaleel and Jabari could talk. they were having pain. Other complications include pneumonias, complicated type of pneumonia called acute chest syndrome, which both boys have had,” Douglas-Lindsay said.

Jaleel and Jabari told News 6 their two other siblings, ages 1 and 7, are also dealing with sickle cell disease.

“The thing is they haven’t gone through much of the struggle that me and Jabari have over the years because they’ve come to Nemours. I see better technology now,” Jaleel said.

The brothers though said they are hoping to educate others and said that on bad days, they hang on to their faith.

“Don’t lose faith, always have hope and keep God in your life,” Jaleel said.

“Find someone to talk to -- it can be your family member, or a nurse or doctor, therapist, or a friend, if you have a connection with someone. It will change your life,” Jabari said.

Douglas-Lindsay said people could help those with the disease just by donating blood or joining the registry for Bone Marrow on bethematch.org


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