A Lifetime Struggle Goes Viral: Lisa’s Story

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Lisa Goodman-Helfand’s scleroderma story starts earlier than most; she was diagnosed at the age of 10. Though she struggled with external symptoms for years, her internal organs remained unaffected until just after her freshman year of college, when a test revealed sclerosis on her lungs. A new medication allowed her to finish school and kept her condition stable for the next 13 years. She got married, became a teacher, had a son, and became pregnant with a second child.

After the healthy birth of her daughter, however, Lisa had such severe complications that she was hospitalized for 218 days, coming close to death several times (she later wrote a book about it, titled Does this Hospital Gown Come with Sequins?). She believes that if her doctors had been better acquainted with scleroderma, this health crisis could have been avoided.

In July of 2015, to show the different effects of scleroderma, Lisa posted two pictures on Facebook: Her own face without makeup (Lisa’s skin is covered with hard red and purple spots) and the face of Chanel White, whose face is unblemished but who suffered organ damage due to scleroderma (see Chanel’s story below). The post had so many shares, Facebook’s automated system asked if Lisa would like to make it into an ad for a nominal fee. Seeing a chance to spread awareness, she agreed, but Facebook rejected the ad, telling her to “avoid focusing on specific body parts.” This prompted Lisa to write a blog post titled, “Facebook Doesn’t Like My Face.” The post was shared over 20,000 times on Facebook and resulted in international media coverage (including this article in People magazine).

Today, Lisa sees a doctor who is a Scleroderma Research Fund investigator and clinical researcher from Northwestern University. She is passionate about the need for more research into scleroderma: “Not everyone can go to a specialized scleroderma center, or see an SRF-funded investigator, so it’s critical to raise disease awareness and advance research for treatments.” She is a popular professional speaker, teacher and author of a blog called Comfortable in My Thick Skin.