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Things You Should Know About the Rare Epilepsies & Social Wellness

The month of July marks Social Wellness Month! Social Wellness Month is meant to highlight the positive effects of healthy relationships as well as encourage people to reach out to others. For families living with epilepsy and especially rare epilepsy, maintaining social wellness may be a challenge. Facing epilepsy can feel isolating and even feel as if you’re going through it alone. Recent research suggests that people with epilepsy sometimes have difficulty forming relationships with others. In fact, one study of patients with poorly controlled epilepsy found that 68 percent of subjects had no personal friends.

The stigma behind epilepsy has a significant impact on health-related quality of life of patients and caregivers and has been linked to social withdrawal, a loss of self-esteem, and isolation. Developing a support network can contribute to social wellness. Some suggestions to improve social connectivity and wellness include:

  • Join a Support or Networking Group – Take a look at REN’s Members & Partner page to find a community that fits your diagnosis and needs.

  • Practice Self-Care – When you’re taking care of yourself – getting enough sleep, drinking water, reading a book you love, journaling, etc – you’re able to take care of others and handle stress better.

  • Ask for Help – Moving furniture, doing some DIY home renovations, or just need a buddy to run errands? Ask a friend to help – not only are you working on your own social wellness, but you’re contributing to theirs too!

(Resources) Learn More About What You Can Do For Your Social Wellness:

Find your Rare Epilepsy Community

If you are diagnosed with a rare epilepsy, visit Rare Epilepsy Network’s 80+ members for diagnosis specific information, education, support, and community.

If you are aware of other valued resources or to provide updates or correct errors, please contact:

Disclaimer: All resources are provided as a courtesy. We are not endorsing any organizations or providing medical advice.


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