Whether you’re a parent hearing the diagnosis of Polymicrogyria (PMG) for your child or an adult who has recently learned you have this rare condition, the experience can be overwhelming. You might feel that the ground has shifted beneath you—and, in many ways, it truly has.
The journey ahead will be unique, unpredictable, and at times deeply emotional. But you are not alone. Others have walked this path before you, and there is strength, guidance, and even joy to be found along the way.
First Reactions
For many, hearing a rare diagnosis triggers a whirlwind of emotions—shock, fear, sadness, even guilt. Parents may mourn the child they thought they were going to have. Adults may grieve the version of themselves they were before the diagnosis. These emotions are valid, and you are not alone in feeling them.
Give yourself permission to feel all of it. The process of accepting a diagnosis—whether your own or your child’s—doesn’t follow a linear path. You may bounce between hope and despair, frustration and gratitude. This is normal. What matters is that you take it one moment, one day, at a time.
Understanding the Diagnosis
Whether you’re a parent whose child has just been diagnosed with PMG or an adult receiving the diagnosis yourself, the news can bring a flood of questions, uncertainty, and unknowns
If you are a parent, you might be just beginning to learn what a condition like Polymicrogyria (PMG) means. You may feel pressure to read everything you can, to find answers immediately. But take it slow. PMG and other rare diseases affect individuals differently—no two stories are exactly alike. Try not to compare your child to others; your child’s journey is uniquely theirs.
If you’ve been diagnosed as an adult, you’ll likely want to know what the future holds and wonder why this wasn’t diagnosed sooner.
No matter the age at which PMG is diagnosed, there are a few critical steps to take after the initial diagnosis, including:
· Seek expert advice. Meet with a medical geneticist or genetic counselor and a neurologist to gain a better understanding of what PMG is, including the severity, location, symptoms and potential interventions that may be needed (including speech therapy, occupational therapy, physical therapy, and other medical specialists).
· Find reliable information. It can be tempting to search the internet for information when you have so many unanswered questions, but be sure to use reliable sources. You can find links to credible information here. (https://pmgawareness.org/resources/)
· Connect with others. Whether you’re a parent or a patient, finding people who get it is vital. Online groups, nonprofit communities, and condition-specific forums can be a lifeline. We offer a private Facebook group for those diagnosed with PMG and their families. You are invited to join us!
· Build your tribe. Finding people in your community to support you is important—whether family, friends, neighbors, or community groups—having a support network can make a difference in navigating the challenges ahead. You may find that the people you were closest to become more distant. They may not know what to say or do, so instead of feeling awkward, they may pull away. Encourage yourself to open up the conversation with them. Tell them that you need their friendship now more than ever.
· Be kind to yourself. You may not have all the answers now. That’s okay. Allow yourself time and space to adjust to the diagnosis.
· Consider counseling. Sometimes the emotions that accompany a diagnosis of a rare disease, like PMG, can be overwhelming. It is always a good idea to find a therapist who can help you process the feelings that you may have.
· Focus on what you can control. In the midst of all the uncertainty you are feeling right now, focusing on what you can control, like gathering information, building a care team, and creating a supportive environment, can empower you to move forward with strength and a purpose.
· Set realistic goals. Celebrate progress, not perfection. While traditional milestones are significant, for individuals with PMG, even the smallest steps—our ‘inchstones’—are meaningful achievements worth celebrating.
· Find joy in your “new normal.” Rediscover what makes you laugh, engage in hobbies, and connect with others who see the world through a similar lens. A PMG diagnosis will certainly change your life, but it does not have to define it.
Whether you’re a parent raising a child with a rare condition or an adult navigating life after diagnosis, remember: others are walking this path too. Many understand your fears, your questions, and your small victories. Find them. Share your story. And know that support, healing, and strength are possible—especially when you don’t walk the road alone.
To find other PMG families and read their stories, please visit the Contact a Family and PMG Journey pages of our website.
