Disorders of the Corpus Callosum

Newly Diagnosed

You Are Not Alone: Navigating a New DCC Diagnosis

Receiving a disorder of the corpus callosum (DCC) diagnosis—whether for yourself or a loved one—can feel overwhelming, but you are not alone. It’s natural to have questions, concerns, and even uncertainties about what the future holds. However, many individuals and families have traveled this path before and found ways to learn, grow, and thrive.

A DCC diagnosis is just one part of a person’s story—it does not define who they are or what they can achieve. With the right tools, guidance, and support, individuals with DCC can develop new skills, build meaningful relationships, and live fulfilling, independent lives. Whether you’re a parent, a caregiver, or an individual with DCC, there is a strong, caring community ready to walk beside you on this journey. This guide will help you understand what to expect, what steps to take next, and where to find support at each stage of life.

Early Steps After Diagnosis: Where to Start

If you or a loved one has recently been diagnosed with DCC, you may be feeling a mix of emotions—relief in finally having answers, but also uncertainty about what comes next. While no two individuals with DCC are exactly alike, there are important first steps that can help you or your loved one get the right support early on.

Give Yourself Time to Process

It’s okay to feel a range of emotions after a diagnosis. Take time to learn at your own pace and seek out supportive communities of parents, caregivers, or adults with DCC who understand the journey.

Would you like information on how to process your new diagnosis?

Parents – This excellent blogpost & podcast episode from Exceptional Lives provides some information on how to procesd a child’s new diagnosis
Adults – This resource provides tips to help you cope with your own diagnosis

Find Medical & Therapy Support

While there is no “cure” for DCC, early intervention and therapies can help individuals reach their full potential. Consider reaching out to:

A neurologist or developmental specialist to better understand how DCC affects your child or yourself.
Early intervention programs (for infants and toddlers) to access speech, occupational, and physical therapy. You can find a complete list of Early Intervention Programs by State here.
Specialized therapists who can assist with communication, motor skills, sensory processing, and social-emotional development.

The NODCC has a state-specific resource database of medical & therapy professionals that come recommended by our family. Find our more information, or add your favorite professionals to our database.

Visit the Database

Start Tracking Development & Needs

Keeping a medical and developmental record can help track progress, note challenges, and advocate for services when needed. Documenting milestones, therapies, and school accommodations will make it easier to adjust support over time. Visit our Prenatal to Toddler Life Stage page to find additional advice on how to track this information.

Learn More

Build a Support System

You don’t have to go through this alone. Connecting with other families, support groups, and advocacy organizations can provide reassurance, encouragement, and practical advice.

Get connected with the NODCC Community by joining any of our monthly community calls for new and expectant parents, moms, dads, grandparents, adults with DCC, and a variety of other topics.

Find A Local Event

Understanding DCC: What It Is and How It Affects Individuals

Disorders of the Corpus Callosum (DCC) are conditions in which the corpus callosum—the bundle of nerve fibers connecting the left and right hemispheres of the brain—develops atypically. These differences can range from complete agenesis (where the corpus callosum is entirely absent) to partial agenesis (where it is only partially formed), hypoplasia (where it is thinner than usual), or dysgenesis (where it is malformed). DCC can be diagnosed through brain imaging, such as MRIs, and may be identified before birth or later in life when developmental differences arise. While the exact causes vary, they often stem from genetic or environmental factors that affect brain development. Importantly, every individual with DCC is unique—some may experience significant challenges, while others lead largely typical lives.

Learn More About DCC

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For More Information

You can find more information from our webinars and conferences on our YouTube page.

Visit Youtube

Common Challenges & Strengths

Individuals with DCC experience a range of challenges and strengths that shape their learning, communication, and daily life. With the right information, support, and advocacy, individuals with DCC can learn, grow, and live fulfilling lives. No matter where you are on this journey, remember—you are not alone.

Common Challenges

Some common challenges include executive functioning difficulties, which can make planning and organization harder, as well as motor coordination struggles, sensory sensitivities, and differences in social interaction and communication. Many individuals with DCC also face academic learning differences, particularly in areas requiring abstract thinking or problem-solving.

Common Strengths

They also often possess incredible strengths, such as strong rote memory, attention to detail, deep focus on interests, resilience, and creative problem-solving abilities. To help individuals with DCC thrive, it’s important to encourage independence, use structured routines, and provide social-emotional learning opportunities. By focusing on their strengths while offering the right support, individuals with DCC can develop confidence and success in their unique ways.

Information to Support You & Your Family

Disorders of the corpus callosum (DCC) affect each person differently, and their needs may change as they grow. Understanding how DCC impacts different life stages can help families, educators, and individuals plan for success and support.

DCC Stories

Families & Adults who have been through this journey share their experiences, challenges, and successes to provide hope and guidance. Watch these videos to hear firsthand stories from parents, caregivers, and individuals with DCC as they share insights, advice, and encouragement for those newly diagnosed.

Watch on Youtube