Monday, March 31, 2014

Week 32: Smart Patients


This week was another relatively quiet one in Lemon's life.  We went to music class again, and this time Nona came with us to observe and take pictures (with her iPad--she's a very modern grandparent).  As usual Lemon got a huge kick out of the class, and then fell deeply asleep in the car.















































Little did he know that the drive after class was longer than usual since I was taking him straight to the pediatrician's office for his flu booster.  Not exactly the most fun way to wake up, but he handled it pretty well.


The weather here in Madison is finally warming up, and we took advantage of the warm weather this weekend to bring Lemon to a local park for the first time.  He was appropriately cautious about the swing at first,

but quickly realized that it is THE BEST THING EVER.


We may have a serious swinging addict on our hands by the time summer is over.

The other thing I worked on quite a bit this week was to help launch a new online CF community.  This community is based on a platform called Smart Patients (www,smartpatients.com).  In some ways, it's similar to a social networking platform like Facebook or Twitter, but it is designed specifically for patients and their caregivers to have longer, in depth, and more private conversations about health-related topics.  Another great feature, especially for diseases with a small number of patients (like CF) is that the platform allows for cross-disease learning with other patient groups on the site, like patients with different types of cancers and inflammatory bowel disease.  Since conversations are "tagged" by keywords associated with the topic, it's easy to look through all of the active and archived conversations on the site that mention a particular topic.  There are actually a lot of common issues that patients with chronic conditions must deal with regardless of their specific diagnosis (obtaining prescriptions, dealing with performing fairly complex care at home, interacting with friends and relatives about issues involving their disease, getting kids to stick to special diets and treatment regimens).  By interacting with patients with other chronic conditions, we (the CF community) hope to learn from the experiences of others, and also contribute our own experiences to the knowledge base.

If you are a CF patient or caregiver, and are interested in joining the community, please use this link:
https://www.smartpatients.com/cystic-fibrosis

We're eager to have more people join our conversations!

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