Hi Denise,

Nice article! Personally, I really like emedicine and pubmed.

And the best for me, for rare pediatric diseases at least, is getting information from families who have already walked the path of that rare diagnosis. For rare diseases such as my niece's chronic liver disease, there actually isn't enough patient-friendly info. online. And there are some issues that don't really come up in the standard health websites - food allergies following pediatric liver transplants, GI bleeds catching families by surprise pre-transplant, school and IEP plans, how to get travel insurance - all sorts of quality of life issues that start to pop up as commonalities once we begin comparing what it is to live with rare and chronic pediatric liver diseases.

Blogher says websites are conversations, and for me, health empowerment around rare diseases is most definitely all about conversations and shared stories. Online forums are perfect for that! The internet most definitely is a wonderful thing when parents from all over the world can compare notes with each other on their child's treatment.

Just knowing that somebody else walks in your shoes - it helps. And yes, that is definitely empowering. Getting googled out and scared, not so much. Asking someone who might know about their experience? Having a chance to rant when your child's docs aren't listening? That helps. Not having to learn how to find info. on a disease from scratch? Learning the history of a disease? That helps too.

- Amanda M
Imagine Bright Futures
Forum Admin Team, Liver Families , an international online forum for families whose lives have been touched by pediatric liver disease and transplant.

Whil e agree that the internet is a great resource, and especially a great way to connect with other people who may be going through the same life issues, it can be a dangerous place for a hypochondriac! I am not one, but on a few occasions, I have been sure something was horribly wrong with me, done some research on the internet which confirmed it and raced off to the doctor with my new found info in hand. Doctors I think respect the internet- but dislike having patients come to them with a self diagnosed internet disease! lol

"I believe the key is for women to not set any limits." No Limits Ladies.

I am so incredibly grateful for the internet. It has helped our family with our myriad of odd medical conditions (I even made a primer for my blog readers).

Once you are diagnosed with something, having all these resources is immensely helpful. I didn't find it particularly helpful when I was awaiting diagnosis, because while I had an inkling of what I was dealing with, I don't have the medical skills to sift through the possible dx to get the correct one.

But it is so wonderful to find a community of other people with the same issues and find ways of managing together. Many of my best celiac & dairy-free recipes are from friends who travelled the road before me. And the people who have given me the most help since I was dx with fibromyalgia have been online.

It's a mixed bag, but I'm so grateful for the strength in numbers. I just try to stay away from the pre-dx hysteria for myself.

Rachel
A Gaggle of Girls
Rachel's Recipe Box