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Angelman Syndrome Day: Insights from Parents and Therapists

Jan 31st, 2025 | by Serena Patel, PT, DPT

Serena Patel, PT, DPT

January 31st, 2025

Every year on February 15th, we observe International Angelman Day (also known as Angelman Syndrome Day) to raise awareness and honor our loved ones with Angelman syndrome (AS). In this post, we’ll explore what Angelman syndrome is, common characteristics, treatment options, and, most importantly, practical advice from parents who have walked this path. If your child has been diagnosed with Angelman syndrome, you’re not alone—we’re here to support you.

“Your child will meet milestones and make progress—just in their own way and time. Keep the bar high so they can reach their maximum potential!”

What Is Angelman Syndrome?

Angelman syndrome is a rare neurodevelopmental disorder caused by issues with a specific gene (UBE3A) that occurs before birth. It primarily affects the nervous system—controlling movements, behaviors, thoughts, and automatic responses, and also causes developmental delays and physical impairments.

Although there is no known cure, there are treatments and therapies that can significantly improve quality of life and help children with Angelman syndrome reach their highest potential.

Common Characteristics of Angelman Syndrome

Each person with Angelman syndrome is unique, but some common characteristics include:

  • Developmental delay
  • Intellectual disability
  • Limited speech
  • Movement and balance challenges
  • Seizures

 

Unique Characteristics Seen in Children with Angelman Syndrome:

Children with Angelman syndrome often display:

  • A joyful and enthusiastic demeanor—frequent smiling and laughter (which may lessen with age)
  • Repetitive hand-flapping motions
  • Hyperactivity and a limited ability to focus for extended periods
  • Sleep disturbances, which often improve with age

 

How Common Is Angelman Syndrome?

Angelman syndrome affects about 1 in 12,000 to 20,000 people worldwide. It occurs equally in boys and girls and is often caused by a spontaneous gene mutation rather than being inherited.

Because Angelman syndrome is so rare, getting an early diagnosis can make a world of difference—giving your child access to the therapies and support they need to thrive.

Angelman Syndrome Treatments & Therapies

While there is no main treatment or cure for Angelman Syndrome, ongoing research is targeting specific gene therapies for future treatment possibilities. Currently, treatment focuses on managing symptoms with a team of specialists, including pediatricians, neurologists, physical therapists, gastroenterologists, and nutritionists.

Children with Angelman syndrome often have their own unique set of symptoms, and their experiences can vary even among those with the same diagnosis. That’s why a personalized approach to treatment is so important—helping ensure that your child receives care tailored to their individual needs and strengths.

Angelman Syndrome Symptom Management Strategies:

  • Seizure management – Anti-seizure medications tailored to the child’s needs
  • Physical, occupational, and speech therapy – To support mobility, communication, and daily life skills
  • Assistive devices – Such as ankle/foot braces to improve walking
  • Sleep support – Establishing structured bedtime routines
  • Behavioral therapy – To help with focus, hyperactivity, and social interactions

 

Early diagnosis and intervention can significantly improve a child’s quality of life.

Parent-to-Parent Tips: Navigating Life with Angelman Syndrome

Being a parent of a child with any disability can be overwhelming, but you are not alone. Here are some insights from other AS parents:

Believe in Your Child

Remind yourself that your child is probably capable of more than you think—keep the bar high so they can reach their maximum potential! Your child will meet milestones and make progress, just in their way and time.

Be Proactive

Start working on communication, daily living skills, and academics before providers suggest it. You know your child best!

Find Support

There are local and virtual support groups you can join to get more advice from people who have knowledge to share. Some popilar options include:

Additionally, if you are interested in bringing your child to NAPA for weekly or intensive therapy, we have parent groups on Facebook for each of our clinics:

Visit an AS Clinic

  • Visit an AS clinic! There are clinics globally that can help you better understand your child’s diagnosis.

Give Yourself Credit

  • Understand that everyone is not going to be in the same place emotionally all the time. Your love and attention to your child will not go unnoticed.
  • Check out: Angelman Syndrome Foundation – With you for the journey for other resources. Other AS families have put together incredible resources for navigating Angelman syndrome.

February 15th is Angelman syndrome awareness day

About the Author

Serena Patel is a pediatric physical therapist at NAPA Center Los Angeles who received her DPT from Duke University. Outside of her love for kiddos, she enjoys spending time outdoors with her friends and family, reading or baking delicious goodies. Having been trained in dance, she also appreciates sharing her passion with other kids through teaching occasional classes at her old studio!

About NAPA Center

At NAPA Center, we take an individualized approach to pediatric therapy because we understand that each child is unique with very specific needs. We embrace differences with an understanding that individualized programs work better. For this reason, no two therapeutic programs are alike. If your child needs our services, we will work closely with you to select the best therapies for them, creating a customized program specific to your child’s needs and your family’s goals. Let your child’s journey begin today by contacting us to learn more.

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