Tenth Annual Infantile Spasms Awareness Week Promises Valuable Insights and Support Resources

Tenth Annual Infantile Spasms Awareness Week Scheduled for December 1-7

From December 1 to 7, 2024, a coalition of organizations will celebrate the Tenth Annual Infantile Spasms Awareness Week (ISAW). This event is primarily focused on enhancing awareness and understanding of infantile spasms (IS) and aims to provide essential educational resources to medical providers, caregivers, and the general public.

Infantile spasms represent a medical emergency that, if not treated promptly, can cause significant and irreversible brain damage, highlighting the critical need for early intervention. Kari Luther Rosbeck, President and CEO of the TSC Alliance®, emphasizes that ISAW serves as a crucial platform for educating both parents and healthcare practitioners on the importance of recognizing the subtle symptoms and initiating swift treatment to safeguard children from severe developmental challenges.

The Infantile Spasms Awareness Network (ISAN), a team of 37 international organizations, is spearheading various initiatives to provide insights into the characteristics of IS, revealing the signs and symptoms to increase the likelihood of correct diagnoses.

One meaningful tool ISAN has developed is the 'STOP' mnemonic, designed to help caregivers recall the essential steps in recognizing the symptoms of infantile spasms. The four components of the mnemonic guide individuals through crucial observations:
1. See the signs: Be mindful of clusters of sudden, repeated, uncontrolled motions such as head bobbing or body crunching.
2. Take a video: Recording these symptoms can be immensely helpful; share the video with your doctor right away.
3. Obtain diagnosis: Seek professional assistance to confirm an irregular brain wave pattern through an EEG (electroencephalogram).
4. Prioritize treatment: Quick intervention can help reduce the risk of developmental delays.

Mark Halvorsen, PharmD, Associate VP of Medical and Scientific Affairs at Upsher-Smith Laboratories, echoes the importance of early recognition and intervention. With years dedicated to the infantile spasms community, Upsher-Smith works collaboratively with 37 ISAN partners to raise awareness. Halvorsen believes that by equipping people with knowledge and resources, the chances for prompt and effective treatment improve significantly, enhancing the quality of life for affected children.

Infantile spasms occur in approximately 1 in 2,000 children, leading to severe and lasting damage to a child's rapidly developing brain. These seizures are often characterized by subtle, repetitive movements, including jerking motions in the mid-section, drooping of the head, raising arms, or wide-eyed blinking. While these spasms usually manifest between the ages of four and six months, they can develop at any time during the first two years of life. Unfortunately, IS are frequently misdiagnosed as other health issues, including colic or reflux, causing delays in appropriate treatment.

Globally, statistics indicate that an infant is diagnosed with IS every 12 minutes, making ISAW a critical initiative. This year's observance will involve a blend of social media campaigns, interviews across various media platforms, projects targeting physician awareness, and activities coinciding with the American Epilepsy Society's annual meeting in Los Angeles. The ISAW 2024 campaign is supported by main sponsors, including Upsher-Smith Laboratories, LLC, and Mallinckrodt Pharmaceuticals.

To stay updated and show your support, you can follow the hashtag #ISAW2024 and explore more resources at infantilespasms.org.

Together, by sharing knowledge and raising awareness, the coalition hopes to conquer the challenges faced by families affected by infantile spasms and ensure that these children receive the care they need as swiftly as possible.