The 35 Best Blogs for Epilepsy Support

Posted on November 29, 2011

Every November, the medical community, patients, loved ones, and compassionate supporters recognize Epilepsy Awareness Month. As with many medical conditions, epilepsy, Dravet Syndrome, infantile spasms, seizures, and related diagnoses creak beneath the weight of some very unfortunate myths. That’s why hearing directly from professionals, patients, parents, and other loved ones proves absolutely integral. Without their voices, misconceptions keep perpetuating, leaving many with epilepsy feeling unfairly misunderstood and marginalized. The following blogs provide possible venues for gaining a well-rounded education about everything the condition involves. For the diagnosed, families, and friends, they also weave together a nurturing community exchanging information, advice, and most importantly, love.

1. Blogs at epilepsy therapy project:

   The blogs kept here pull from a wide range of perspectives and experiences to offer love, support, and advice for persons with epilepsy and their loved ones alike.

2. Serene’s Epilepsy Legacy:

   Despite its glacial update schedule, advocate Serene Low still posts some useful information regarding epilepsy awareness.

3. Living Well With Epilepsy:

   Jessica Keenan Smith packs Living Well With Epilepsy with a staggering array of media offering advice, information, resources, news, and updates regarding the search for a cure.

4. My Life as Mandy…with Epilepsy:

   This blog humanizes individuals with epilepsy in a warm, encouraging, and positive tone while simultaneously promoting awareness and advocacy and raising money for medical research.

5. My Epilepsy Story:

   A wife and mother who’s experienced epilepsy for two decades opens up about her life and how fortunate she feels because her body takes to treatment, but the impact on her children continues plaguing her.

6. UK Epilepsy Blog:

   Peoples across the UK diagnosed with epilepsy gather to dish out advice, share their findings and personal stories, comment on news, organize events, promote awareness, raise money for a cure, and numerous other noble strategies showing support and solidarity.

7. Kat’s Cafe:

   Kat’s Cafe actually covers a few different special education topics, as the blog owner mothers three boys with various diagnoses. Epilepsy is among them, and she covers the subject in detail.

8. Blogs at Epilepsy U:

   This website requires registration in order to participate, but offers blogs, communities, and more with the intent of educating the world about epilepsy and providing a forum for the diagnosed and their loved ones.

9. eBlog:

   Epilepsy Foundation hosts a few different blogs covering different subjects related to the condition, including policy, daily life, science, and more.

10. Angels4Epilepsy:

    The sterling nonprofit provides comfort and love for children with epilepsy by visiting them in the hospital, giving them presents, and raising money for a cure.

11. Snowflakes:

    As is the case with some of the other blogs listed here, Snowflakes covers a few different medical conditions, epilepsy among them. Most of the content focuses on offering straight-up information about the latest research and perceptions.

12. Living in a Brainstorm:

    Living in a Brainstorm chronicles life with simple partial epilepsy as both a comfort to other patients and a valuable education for those without such a diagnosis.

13. BC Epilepsy Society Blog:

    Although Canadian, the nice selection of epilepsy resources available through this organization’s official blog can benefit readers the world over.

14. Brett’s Epilepsy:

    Brett Meath has lived with epilepsy since age 8, and he uses his blog, videos, interviews, and notes to offer up some extremely useful first-person insight.

15. Epilepsy Diary:

    Although the blog doesn’t update terribly often, it still does an excellent job of openly discussing the realities behind an epilepsy diagnosis. Head to the forums for more active, personal interaction.

16. Epilepsy Talk:

    Blogger Phylis Feiner Johnson dealt with epilepsy for 20 years and lends her copywriting skills to promoting advocacy, awareness, fundraising, and support.

17. Blogs at Epilepsy Foundation:

    Here, users post experiences and observations about their epilepsy, and others answer their questions and show love and support when problems arise.

18. Patty’s Epilepsy Chronicles:

    This intimate, emotionally evocative resource pulls from 40 years of epilepsy, making it an introduction for both the newly diagnosed and those living with it for decades.

19. Shaken but not beaten:

    Despite being a very new blog, Shaken but not beaten still posts valuable insights about living with, helping out, and understanding epilepsy, especially in school and the work force.

20. Epilepsy South Africa’s Blog:

    If you ignore the sloth-like pace at which Epilepsy South Africa’s Blog updates, it’s a trove of information regarding awareness and advocacy efforts throughout the country.

21. EpilepsyMoms.com:

    As one can probably assume from the title, this read focuses on assisting parents in keeping their kids healthy at home and in school.

22. Epilepsy Action:

    Epilepsy Action, both the blog and the surrounding website, come packed with essential reads for anyone needing (or wanting) to know more about the condition.

23. CALEB’S Mom: Caring And Learning Epilepsy Blog:

    After losing her young son to epilepsy, Beth Baker began advocating for parents and patients alike through her blog and in person as a Parent Advocate at Vanderbilt Children’s Hospital.

24. Beating Epilepsy:

    Learn all about one preschooler’s struggle with epilepsy, which required a special diet and surgery to effectively treat.

25. Recent Blogs at the American Epilepsy Society:

    Read the American Epilepsy Society’s latest blog posts on everything from relevant research and press releases to personal stories and inquiries.

26. Autism, Epilepsy and Self-Injurious Behavior:

    Patient Advocate Kim Oakley mothers a son with all three conditions listed in the title, dedicating her blog space to discussing them separately and as interacting entities.

27. Epilepsy Warriors:

    A family whose son was diagnosed with the rare epilepsy form Dravet Syndrome blogs about the ketogenic diet, daily life, and searching for a cure.

28. Being Bertrand:

    Little Bertrand has received a number of different diagnoses, most of which receive coverage here. Discover how they overlap with epilepsy and what his family and doctors have done to ensure his health and safety.

29. Special Needs Mom:

    Suzanne Perryman’s blog reflects the triumphs and tragedies of life ensuring special needs children receive all the essential care and love, with epilepsy among them.

30. DO IT FOR DEZH:

    The parents of a young girl with Dravet write about their daily lives as well as provide information and raise money for her future service dog.

31. Random Thoughts About Us:

    Much of the content at this general family blog centers around a young son’s seizures and service dog. In addition, the Engstroms also raise money for The Epilepsy Foundation’s Minnesota and North Dakota chapters.

32. living for grace:

    Faith may not prove the best strategy for managing epilepsy and Dravet Syndrome for every child and parent, but some might find it a great comfort. This family certainly does.

33. Marissa’s Bunny: An Infantile Spasms Awareness Blog:

    A family of stuffed rabbits travel the world in order to raise awareness of infantile spasms and epilepsy, with entries about children the toys encounter as well as the eponymous girl’s progress.

34. Aiden’s Journey:

    Aiden’s Journey might be on hiatus at the moment, but it still provides an insightful, necessary look at how Dravet Syndrome affects patients and their loved ones.

35. E. is for Epilepsy by Paula Apodaca:

    Paula Apodaca hasn’t updated since May 2011, but she lived with epilepsy for over five decades – making her an incredible reference when wanting to learn more about the condition.