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Are there other people out there dealing with the same conditions?

Can we be mutually supporting?

Is there anything I can learn from them, or anything I can help them learn from my experience?

 

The answer is almost certainly ‘yes’.   With the proliferation of social media into our daily lives, it was natural that support groups would spring up for people with similar medical conditions. These sites offer valuable insights into the experiences of others, including information on effective treatments (in their personal experiences), comparative reviews of different treatments, pricing, and overall moral support.

Social media sites focusing on health related issues include:

PatientsLikeMe is ‘…committed to putting patients first, by providing a better, more effective way to share real world health experiences in order to help yourself, other patients like you, and organizations that focus on your conditions.’   Users can learn from others by comparing treatments, symptoms and experiences with others similar to themselves. They can also share experiences and give and get support to improve their lives. As of July 2015, PatientsLikeMe has over 350,000 members covering more than 2,500 conditions.

Smart Patients is ‘an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience’. As of July 2015, SmartPatients has ~ 80 active communities for members with different conditions.

Iodine helps ‘compare treatments, find to-rated medications, and read people’s experiences for hundreds of medications’. As of July 2015, Iodine has over 100,000 members.

Paying Till it Hurts is a FaceBook Group created by the New York Times as ‘… a forum for conversation, analysis, and insight into health care pricing and costs in the US’.

Alliance Health seeks to ‘… bring disease management into the 21st century by empowering patients with social health communities, affordable medications, and innovative ways to manage healthcare costs’. As of July 2015, Alliance Health has 29 active communities.

 

Remember:  We coach, support, educate, and empower.  We illuminate options you may not have known you had.  But we don't decide what's right for you in your unique circumstances; only you can do that.  And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.