NEWLY DIAGNOSED

Welcome to the PCDH19 Alliance

“We are so glad you have found us. You have likely recently heard the words, “PCDH19 Epilepsy” for the first time and have found us while searching for answers and information. Some of you have been on this journey for several years, and you may be feeling relief to finally have a diagnosis. If your child is very young, you may still be dealing with the shock of the initial seizures. You may be feeling a mix of different emotions that you don’t quite understand yet. Wherever you are on your personal journey with PCDH19 Epilepsy, we have been there,  and you are not alone. We are here to support you, and provide you with information.
While getting a diagnosis of PCDH19 Epilepsy may seem devastating, do not lose hope. The PCDH19 Alliance believes in a better future for our children and ultimately a CURE. Together, our families work tirelessly to raise awareness and funds for research because we believe that a cure is out there, and together we will find it.”
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– Julie Walters | Executive Director of the PCDH19 Alliance

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What is PCDH19 Epilepsy?

We have compiled a summary of PCDH19 symptoms and a brief explanation of how it is passed on genetically. It is important to remember, however, that this epilepsy manifests differently in each individual. Not every girl or woman (in rare, cases boys/men) will experience all of the symptoms, and those sharing common symptoms may have a wide range of severity and frequency.
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What About the Future?

Though difficult to manage seizures and intellectual disability (ranging from mild to severe) are common in PCDH19 Epilepsy, due to the broad range of clinical manifestations it is impossible to predict what course an individual’s health will take. This is particularly true because the PCDH19 gene was only discovered in 2008.
With conditions like this, typically the more severe cases are discovered first. But as awareness increases in the medical community and genetic testing becomes more widespread, milder phenotypes are often discovered.
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What About Research?

The future is also bright on the scientific front. On multiple continents, research is being done to develop a treatment protocol for optimum seizure management, and ultimately find a cure.
One of the primary roles of the Alliance is to raise funds and direct them toward promising research projects. Our PCDH19 Research page is a great place to learn about recent research and stay informed of opportunities to participate in current studies.
LEARN MORE ABOUT THE LATEST RESEARCH

Want more resources? From patient assistance grants to ladybug awareness cards, we offer a lot of support to struggling families.

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