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Helping others is often the best way to help yourself

How enrolling in a long-term medical study helped mothers similar to me—and gave me answers I'd never have received otherwise.

Photo of Katie Clark
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Building on Natalie's inspiration, I wanted to share the success I've also had with being a mother with Crohn's disease. Similar to the UCSD study, University of California, San Francisco has the PIANO study (pregnancy outcomes and drug safety in women with IBD on immunosuppressive and biologic medications).

I had to be on Cimzia during the 2nd + 3rd trimesters with my son, who is now 3.5 (and incredibly healthy). I was worried non-stop about what that might mean for my pregnancy and more importantly, sweet little Kai. I searched forums + studies day and night to find other mothers who had gone through the same experience (with very little success).

The study has followed us both (mama + baby) since before birth—and still does milestone check ups. At the birth, my blood, the cord blood, and Kai's blood were taken and the drug was found present only in my blood. They later tested my breastmilk too, which showed basically no trace of the drug there either. I'd NEVER have known this had I not been involved in this study, and, more importantly, I wouldn't be able to help all of the mothers that reach out to me through my blog. This post, in particular, has sent more women to me with questions, comments, support than I would have ever imagined.

What is a provocation or insight that might inspire others during this challenge?

It's a joy and a privilege to be able to share my own experiences through pregnancy and childbirth knowing that it might give other mothers and their families comfort.

How does this research relate to our use cases and personas?

The mother suffering from chronic disease is constantly looking for answers to new and/or terrifying questions (I know, I'm one of them!). It's also so very comforting to share resources with friends, partners, and families who are trying to be supportive.

Tell us about yourself:

I'm a designer and professional patient. I'm an open book about my experiences with chronic illness...quite possibly too open. ;)

Are you currently an employee of Sutter Health or UCB Pharmaceuticals?

  • No

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Photo of Bettina Fliegel

Hi Katie. Thanks for sharing your experiences with the community here! In the post you mention that you had little success in finding information on other women who went through pregnancy with Crohn's Disease by searching online. I am curious about any connections that might have been facilitated by your doctors. Is there a mechanism in which any of your doctors or the clinic staff connect patients to each other for peer to peer, or a support group? I saw on the PIANO website that there are many support groups for Crohn's Disease patients. Would an in person support group for pregnant women with Crohn's Disease, or new moms with Crohn's disease have interested you?

Are you familiar with the digital community, HealthUnlocked?
https://challenges.openideo.com/challenge/new-life/research/healthunlocked