As you might know, I am a member of the Society for Participatory Medicine (S4PM). They publish a blog called e-patients.net where empowered patients share their stories and exchange ideas on how to take control of their own healthcare.
Last week, I came across this awesome story of how these parents had to learn about DNA, gene mutation and medicine to understand what was going in their son’s body. It is quite technical and extremely interesting. If you have not read it yet, please do read it.
I shared this link with the members only listserv of the S4PM. This listserv is available for everyone to read here. E-patient Dave saw this post and published a blogpost on e-patients.net under the section – found on the net. Today, he shared that a mother contacted him to share that they saw this post and are contacting the doctor mentioned in the post. I really hope this helps their child. This is the reason for sharing such information on blogs. Even if it helps one person, it is completely worth it! Special thank you to Dave for posting this into the e-patients.net blog.
If you are not a member of S4PM, you should become a member to participate in the awesome discussion with the members of S4PM. It takes only $30/year to become a member.