Stories about: sickle cell disease

Manny: Hoping new research helps others with sickle cell disease

Manny, who is in a clinical trial for sickle cell disease, is examined by his doctor.
Manny at a visit with Dr. Esrick [PHOTO: SAM OGDEN/DANA FARBER]
Emmanuel “Manny” Johnson, Jr., shares many loves with his little brother, Aiden — from basketball to video games. One thing he wishes they did not share is sickle cell disease (SCD), so Manny is playing a role in a new effort to improve treatment for patients like 7-year-old Aiden, himself and others living with the inherited blood disorder.

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Stroke in kids: What’s different?

pediatric stroke
Illustration: Fawn Gracey

Every May, we recognize National Stroke Awareness Month to honor everyone who has experienced a stroke — and to raise awareness of this disease. That awareness is especially important for pediatric stroke, which is more common than you might imagine. “Stroke occurs throughout childhood, from birth through 18 years of age, and more commonly than people think,” says Dr. Michael Rivkin, co-director of the Stroke and Cerebrovascular Center at Boston Children’s Hospital. “In fact, among newborns, its occurrence is very nearly that of its occurrence in older adults.” Here, he shares four facts parents need to know about pediatric stroke — and how it differs from that in adults.

No1
Kids aren’t immune.

Despite the misconception that stroke is a disease of the elderly, anyone can experience one — including infants and children. Babies can even have strokes while they are still in their mother’s womb. All told, strokes occur in an estimated 1 in 2,500 live births and affect nearly 11 out of 100,000 children under age 18 every year. The risk of having one is highest in a child’s first year of life, particularly during the few weeks before and after birth.

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Kids can have different risk factors.

Most of us are familiar with the factors that can raise the risk of stroke in adults, such as cardiovascular disease, an irregular heartbeat, obesity, diabetes and smoking. But children are more likely to experience a stroke for different reasons, says Dr. Rivkin. Common risk factors for pediatric stroke include congenital heart disease, blood vessel abnormalities (such as arterial dissection and moyamoya), disorders that increase the blood’s tendency to clot (such as sickle cell disease), infection or inflammation.

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Kids can have different symptoms.

In adults, we’ve been taught to look for the most common warning signs — classic symptoms such as facial drooping, arm weakness or numbness and speech difficulties. Although these signs can also be used to help identify the problem in children, kids can exhibit other symptoms as well. Newborns and young children may be extremely sleepy, use only one side of their body and experience seizures. In children and teenagers, severe headaches, vomiting, dizziness and trouble with balance and coordination, as well as seizures, may signal a stroke.

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Kids tend to recover better.

Because children’s brains are still developing, they tend to recover better than many adults. Indeed, the problems that result from the stroke (such as weakness and numbness) can often improve over time with therapy. A team approach to pediatric stroke — including child neurologists, hematologists, neurosurgeons, interventional and neuroradiologists, physical and occupational therapists, speech and language therapists, neuropsychologists, educational specialists, and physical and rehabilitation medicine physicians — is optimal. “We understand that a multidisciplinary and intensive approach to care of children with stroke provides the best route to recovery,” says Dr. Rivkin.

Learn about the Stroke and Cerebrovascular Center.

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Annelizabeth’s story: Care that feels like home, close to home

sickle cell WalthamWhen you’re 5, it’s nice to have a place that feels like a second home. Where there are lots of hugs. And songs. And games. And you can curl up and watch “Frozen,” your favorite movie.

For Annelizabeth Jean-Baptiste, a spunky Waltham kindergartener, that place is Boston Children’s Hospital at Waltham.

Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born.

Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of relief turned to surprise shortly after Annelizabeth’s birth.

She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw.

Elcie had undergone prenatal screening for sickle cell disease, and her baby had tested negative.

After Annelizabeth was born, her first test for the disease was positive. Her second test also came back positive, and Annelizabeth’s pediatrician referred the newborn to Dr. Rachael Grace, a hematologist at Boston Children’s.

“Dr. Grace explained what sickle cell disease meant. I hadn’t known before,” says Elcie. Grace sees patients twice weekly at Boston Children’s at Waltham, allowing the Jean-Baptistes to stay close to home for Annelizabeth’s ongoing sickle cell care.

Charleen Colleran-Lombardi, a social worker at Boston Children’s at Waltham, is an important part of Annelizabeth’s care team, too. She’s been by Elcie’s side since Annelizabeth’s diagnosis was confirmed, helping Elcie and her husband Maguerre manage their daughter’s care.

“We started learning everything we could about sickle cell disease. It’s so hard when they are little babies and can’t tell you they are in pain,” says Elcie.

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From Bermuda to Boston for surgery to protect the brain of a boy with sickle cell disease

Calvin_Steede_kneeling_in_suitCalvin Steede, who lives in Bermuda, will never forget the day in 2011 when he saw the movie “Winnie the Pooh” with his mother and sister. The film ended, and suddenly the boy who likes to draw and play soccer couldn’t put on his backpack. His arms had stopped working. He couldn’t stand, and soon he couldn’t talk.

Calvin, now 11, had suffered a minor stroke, a complication of sickle cell disease and the first step of a journey that would take him to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for minimally invasive surgery to protect his brain from future strokes.

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