Chronic Style

A blog about living stylishly with a few chronic illnesses.

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Image by Maria Fabrizio via NPR

Image by Maria Fabrizio via NPR

A coordinator from UCSF let me know about this piece on National Public Radio (NPR) that talks a bit about the study I’ve been involved with for years. As with even the most healthy of pregnancies, there is always a level of uncertainty and anxiety that comes with the territory. It’s very refreshing to see that this is becoming a bigger part of the discussion when it comes to the complications of staying healthy when pregnant while still on medication.

As someone who was in remission and able to give birth to an incredibly healthy and thriving boy (while staying on my medicine), I couldn’t be prouder of the work Dr. Uma Mahadevan is doing. Listen to (or read) the full piece here: When Pregnant Women Need Medicine, They Encounter a Void.

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My fearless leader Tim Brown shared this short film (above) via his LinkedIn and Design Thinking blogs last week and I couldn’t help but share as well. The Cleveland Clinic created the film as a way to share how top of mind empathy and patient care are as a part of their overall approach to healthcare. I walk around my life in constant wonder of what other folks are going through — it’s the reason I won’t even honk my horn unless someone is in great danger — and I thought this was an incredible way of illustrating that.

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If you’ve read Outliers, you likely already know what I’m alluding to with the title of this post. Malcom Gladwell, the journalist and best-selling author, refers to what he calls the “10,000 hour rule.” Simply, if you practice something for about 10,000 hours, you’re likely going to be a much greater success at it than the average person — masterful even. In my life, I’ve found this to be quite true with music, design, school, language and well, perhaps most importantly, dealing with illness.

Now I’m not complaining, but having any kind of chronic illness is a day in, day out affair — and I’ve had Crohn’s disease since 2001, so I’ve racked up nearly 96,000 hours of practice there. I’ve had my fun with vasculitis (Wegener’s) since 2008 — that’s approximately 43,000 hours. Needless to say, I am an expert in my own personal course with these diseases because I’ve been there for every hour of practice. I’m extremely lucky to have a medical team that fully respects not only the above, but the importance of my role in the care that I receive (thank you UCSF, you guys are amazing). There are so many patients and families who aren’t so lucky though.

Meet Christy. Her daughter Signe was born with M-CM — an extremely rare condition that Christy recognized and correctly diagnosed (following a misdiagnosis) because as Signe’s mom, she is an expert on her daughter. Check out Christy’s piece in honor of Open Access Week around inserting herself — and the brilliant families in the network that’s been created around M-CM — into the science of the disease and the importance of open research online. Talk about human-centered design… the world needs more Christy’s as far as I’m concerned.

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