From time to time I post a request from someone who seeks a community of patients for a particular condition. I’ve been accumulating them on the communities page on this site. Sure wish we had a grant to grow a list and manage it well! How many people would THAT help??
This one is from a person who’s had mild epilepsy symptoms for years. It’s been well managed, allowing normal life, but it may be time to look for “what’s next” sorts of treatments. So, in addition to working with their medicos, the family’s wondering about astute patient communities.
I know about the one at PatientsLikeMe. Any others?
The Epilepsy Foundation has one too: http://epilepsyfoundation.ning.com/
I’ve already heard back that the patient has found value from exploring PatientsLikeMe – thanks to all who’ve sent notes!
Got a response from Dylan Nelson, of the wonderful Aligning Forces for Quality project – a patient himself:
As a person who has seen many doctors in many hospitals across the country, I can tell you that frustrations with obtaining my damn data are not lost on me.
The online communities that I’ve tapped into for Epilepsy include the following:
– Team Epilepsy Facebook Page (I’m a big fan and they have 246K “likes”) http://www.facebook.com/TeamEpilepsy
– Epilepsy.com has a community that I haven’t delved too far into, but I have raised money for their Epilepsy Therapy Project and met many fellow runners who have epilepsy or are usually parents of kids with epilepsy. http://www.epilepsy.com/epilepsy_therapy_project
– The Epilepsy Foundation might be the best place to go for epilepsy e-communities. http://epilepsyfoundation.ning.com/
I’m sure there are many others, but those are the big ones I know of.
This reply from Dylan’s mother Diane Stollenwerk, a VP at the National Quality Forum, isn’t about patient communities but is about the wicked ways our disjointed system makes life hard for people who are TRYING to be actively involved in their health.
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To add my two cents: It has been a wild and frustrating ride from the outset when Dylan had his first seizure as a teenager.
From the outset, even getting the doctor to talk with DYLAN, rather than just focus on me, was the first inkling that being engaged and outspoken would be necessary. Since then, as he moved across the country to go to Dartmouth, then moved to Boston then DC for work, Dylan has had to deal with tangles over medical records transfers, insurance verifications, testing generics (and the heartbreak when it clearly didn’t work and he ended up in the hospital again), billing errors especially with ambulances, and such.
For better or worse, I pushed Dylan out front to handle this from the get-go, as I knew he was old enough to be the decision-maker about his own health. As the backstop supporter in this process, and his mother so my heart is so very closely tied to his happiness and health, I have found it very frustrating and sad, many times, when I see the messes he’s had to deal with.
And that was separate from and piled on TOP of the actual difficulty of living life with epilepsy.
Good initiative. I admire such work.