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Shriners Children’s provides specialized care for children with Marfan Syndrome.

Marfan syndrome is a genetic neuromuscular condition that causes abnormal weakness in the connective tissues that provide structure and support to the body. Since connective tissues cover the entire body, Marfan syndrome can affect multiple areas of the body, though children diagnosed with this condition may have varying effects. Features of the disorder are most often found in the heart, blood vessels, bones, joints and eyes.

Approximately one in 5,000 people have Marfan syndrome and about three out of four people with Marfan syndrome inherit it, meaning they get the genetic mutation from a parent who has it.

Specific treatments and services may vary by location. Please contact a specific location for more information.

Symptoms

Marfan syndrome is often distinguishable by specific physical traits that may become more noticeable as a child grows. Children with Marfan syndrome are usually tall and thin, with long arms, long double-jointed fingers, a short torso, and very long legs. Additionally, it is common for children with Marfan syndrome to have chest wall abnormalities. A more detailed list of symptoms your child may have include:

  • A tall, lanky body with increased joint mobility
  • Long arms, legs, fingers, and toes
  • Long, narrow face
  • Short torso
  • Scoliosis
  • Chest wall deformity
  • Dislocated lenses of the eyes
  • Overly crowded teeth
  • Pes planus (flat feet)
  • Unexplained stretch marks on the skin
  • Abnormal enlargement of the aortic root of the heart

Treating Marfan syndrome

At Shriners Children’s, we treat the child, not the condition. Our approach to treatment will depend greatly on your child's symptoms and which parts of the body are affected. Our focus is symptom management and improving overall quality of life.

As always, our multidisciplinary team of pediatric specialists work collaboratively to optimize the best outcomes for your child. We strive to care for your child’s overall well-being, which is why our comprehensive wrap-around approach to care ensures that all of your child’s needs are met from the moment you walk in the door.

It is scary to be given news you’d rather not hear, but there is comfort in knowing there is a place that will partner with you on your journey and work hard to ensure the best outcome possible for your child.
Carla, Lexington
female patient wearing brace

Pediatric Orthotic and Prosthetic Services

Shriners Children’s Pediatric Orthotic and Prosthetic Services (POPS) designs, fits and manufactures orthotics and prosthetics for children, from infants to teenagers to young adults. We support children with a range of genetic and acquired pediatric conditions and provide a full range of orthotic and prosthetic services, including bracing for chest wall deformities and scoliosis.

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Bracing

Shriners Children's multidisciplinary team includes orthotists who create braces to meet the individual need of each child – whether to treat a complex condition or common injury.

Pediatric Rehabilitation

Shriners Children's specializes in supporting your child physically, developmentally and emotionally to reach his or her pediatric rehabilitation and therapy goals.

Physical Therapy

Physical therapy at Shriners Children's helps children build confidence and strength, focusing on what is important to them and what they love to do in their daily lives.

Prosthetics and Orthotics

Shriners Children’s Pediatric Orthotics and Prosthetic Services (POPS) designs, fits and manufactures orthotics and prosthetics for children from infants to young adults.

Spine Surgery

At Shriners Children's, we explore all non-surgical options for your child's spine before considering surgery. If surgery is recommended, your child will be in the hands of our world renown orthopedic surgeons.

Next Steps

Request an Appointment

Families and caregivers seeking treatment should start by contacting us for an appointment.

Log in to the Patient Portal

Parents and guardians of existing patients can email, request records, schedule appointments and more.

Refer a Patient

Physicians and healthcare providers can request appointments, start transfers or contact us with questions.