We Aren’t Alone: What it means to receive a diagnosis

Written by an OCNDS parent

My husband and I are parents to two (2) amazing children. Our daughter was diagnosed with OCNDS at the end of October 2019. We have been searching for a diagnosis for her symptoms for 13 1/2 years. Throughout the years, we took advantage of whatever the latest genetic testing was at the time, but it was not until a cheek swab which we did last June gave us any type of answer.

It really was overwhelming to know that there was an answer after so much time searching. We’ve been to so many specialists over the years and have dealt with so many different health and developmental issues. We were so lucky to have an amazing neurodevelopmental doctor who we began seeing when she was 12 months old. He really steered us and supported us through all of these years; always telling us that no matter whether we found an answer or not we were doing all of the right things for her.

Getting the OCNDS diagnosis was overwhelming because it connected so many of her issues together. As soon as we found the foundation’s website, we couldn’t believe how much it fit.

It has been amazing to find a community that is so open and welcoming. It’s really helpful to see so many people sharing information as we all try to learn and compare notes about our journeys. I realize that everybody has unique circumstances, but I cannot tell you how overwhelming in the best way it is to know that we aren’t alone.
For so many years, we never “fit” anywhere and it’s nice to have a home.

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