Robin and Hannah Lucas are a mother-daughter duo from Georgia who are very active in the dysautonomia community. They have been volunteers for Dysautonomia International for two years and Robin helps lead Dysautonomia International’s Georgia Support Group.

After Hannah was diagnosed with POTS at the age of 15, she struggled with her mental health. By the time they found Dysautonomia International, Hannah had been learning to manage life with dysautonomia for several years. Volunteering was a way for Hannah and Robin to help others and give back.

Hannah says, “I was bullied at school. I would wear my compression socks and get made fun of. It was hard and on top of it all I had anxiety about doing simple tasks alone, like going to the bathroom. What if I fainted and no one was there?”

With dysautonomia patients in mind and for anyone struggling with depression or anxiety, Hannah created the NotOK App. This app allows you to let someone know that you are not OK with a push of a button. Hannah and her brother Lucas developed the app, which has helped thousands of people. They’ve become frequent guest speakers on teen mental health at national conferences and in the media too.

Robin and Hannah attend their first Dysautonomia International Conference back in 2018. Hannah says, “[i]t was incredible to engage with other kids who had the same illness as me and it was amazing to see them living inspiring lives.” Hannah lectured during the teen program on how to stay positive while living a life with chronic illness.

Robin and Hannah appreciate the opportunity to learn from others on Dysautonomia International support groups, but they enjoy being there for other families too.

Thank you for everything you do for Dysautonomia International, Robin and Hannah!

If you’re interested in volunteering for one of Dysautonomia International regional support groups, please email Kirsten at kslowey@dysautonomiainternational.org.

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