TMC PULSE

t m c » p u l s e | s e p t e m b e r 2 0 1 6 13 A selfie posted by Casey Wiegand on her popular blog, CaseyLeigh. Credit: Courtesy photo Only Connect Now more than ever, the human race is intertwined. We communi- cate on Facebook, blogs, Instagram, Twitter. We sit late in front of computers, stare at our smartphones, download social media apps. Our exchanges are instantaneous, global, ubiquitous. According to a recent study by Pew Research Center, nearly two-thirds of American adults use social networking sites. This is powerful, because in a world where mass shootings occur almost weekly and everything from our morning lattes to our fathers' strokes are made public via Instagram and Facebook, we are finding less solitude and more solidarity. We have created new communities and, through them, found support. Nowhere is this more meaningful than in the vast world of medicine. Sharing information can be therapeutic for individuals faced with traumatic experiences, challenging diagnoses, or controver- sial treatments. Popular health-related websites now considered mainstays, including CaringBridge, grew out of a need to share one patient's sensitive health information with a close circle of family and friends. And for a patient with a rare genetic condi- tion—so rare that it has only just been named and doctors are still in the process of gathering and crunching data—finding others with the same diagnosis will help close the distance between effective treatments and, hopefully, a cure. According to Pew, seven in 10 adult internet users say they have searched online for information about a range of health issues, including specific diseases and treatments. But that's just the tip of the iceberg. Patients turn to social media to seek out specialists, swap personal medical information, and, when necessary, grieve. About a Blog Nothing in me wants to write this post. So begins a blog entry from Oct. 16, 2015. Written by Casey Wiegand, it details the heartbreak behind three miscarriages. I honestly have dreaded typing these words. Dreaded in a way facing the feelings, dreaded the judgments that will be out there from people who don't know all the details. But I feel a constant soft nudge to be the voice for those in my shoes… So here I am raw and stumbling out to share more of my story… humbled again and putting out my life and my hurt for those of you who understand. Those of you who scroll through your feeds every day and rejoice at the new lives growing in all the beautiful bellies but weeping for the lives that keep getting lost in your own. Wiegand, who initially set up her popular site, CaseyLeigh, to update family while her son was in the NICU, quickly realized the value of connecting to other families with similar struggles. "I stumbled upon this whole community of bloggers and I thought, 'I want to build something like that for my family,'" she said. "Originally I thought it was such a sweet way to capture our life and be intentional about it. Then when my second child was about 10 months old, we got pregnant and we lost that baby. I had already been using this space to talk about our life, so it was really natural for me to process that grief here." Wiegand's posts are full of unedited emotion; they are honest and sometimes heartbreaking to read. On Instagram she has more than 106,000 followers, and her carefully curated posts complement her blog and direct traffic to her site. She's shared her emotional, spiritual and medical journey through three miscar- riages. Happily, she's also shared the joy of two additional births. Her youngest daughter was born in August. "It has been amazing how many women connected with my story," Wiegand said. "It made me feel so much less alone because as I was hurting and processing, I was suddenly connecting with people all over the world who had walked through that and who had felt similar." After her miscarriages, Wiegand set out to uncover a cause. Through blood tests and genetic evaluations, she was diagnosed with methylenetetrahydrofolate reductase (MTHFR) deficiency, a mutation associated with elevated levels of homocysteine and lower levels of folate in the body. She has written about it on her blog—from her diagnosis to treatments to the name of her doctor. That's an important point, because not everyone in the medical community agrees that mutations in the MTHFR gene are associated with recurrent miscarriages, so not everyone tests for it. Wiegand's public disclosure of her own medical journey places her in the role of advocate, empowering other women struggling with loss to seek out testing, ask specific questions, and demand answers. Being able to connect with your friends and family no matter where they are, whether they're across the street or around the world, is healing. — SONA MEHRING Founder and Chief Ambassador of CaringBridge

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