When Lisa Goodman-Helfand decided to show her face without makeup on Facebook, it was a terrifying prospect.
The mother of two from Highland Park, Illinois, has scleroderma, a rare disease that causes chronic hardening of the skin and connective tissues. She uses three layers of concealer to hide the red and purple hard spots on her skin and contracted arms and fingers.
“I have gone to great extremes to hide my bare face,” Goodman-Helfand, a teacher who has been blogging about her disease to raise awareness, tells PEOPLE. “I won’t even leave my house to take the garbage out without makeup on.”
But she wanted to show support for another blogger, Chanel White, whose scleroderma has had less of a visible impact and is instead causing her internal organs to harden, thus putting her life in grave danger.
So in July, she wrote a blog post titled “You Won’t Believe The Story Behind These Two Faces” and included a side-by-side photo of herself and White to “demonstrate the difference in impact that scleroderma can have on patients,” she explains.
“Chanel is a gorgeous 23-year-old, and if you just looked at a picture of her face, you’d think she looked perfectly healthy,” Goodman-Helfand tells PEOPLE. “But she is actually very sadly facing multiple organ failure. And my face, especially without makeup on, to say the least looks very different, but internally, the disease hasn’t taken its toll.”
That’s when things got strange.
Soon after she shared the post on Facebook, it garnered over 600 shares and the automated system asked if she would like to create an ad so that her story could reach more people. Goodman-Helfand was hopeful that her vulnerable act could help others, so she paid the $20 for the ad.
Facebook promptly rejected the ad with the following message: “Your ad wasn’t approved because it includes ‘before and after’ images, or other images showing unexpected or unlikely results. It’s also recommended that you avoid focusing on specific body parts, because these images typically receive high negative feedback.”
The rejection, she says, “was a huge emotional blow. It took a lot of courage to build up to post that.”
After her appeal of the rejection was met with a similar email, Goodman-Helfand wrote a blog post about her experience titled “Facebook Doesn’t Like My Face.” That post has garnered over 20,000 shares on Facebook and gotten international media coverage.
A spokesperson for Facebook issued the following apology in a statement to PEOPLE: “Our team processes millions of reports and advertising images each week, and there are times we make mistakes. In this case, we prevented two posts from being boosted that did not violate our policies, and we want to apologize for this. The boosted posts have since been approved, and we are taking steps to prevent this from happening again.”
Goodman-Helfand is careful to point out that she’s not looking to launch a “war on Facebook”; she simply wants to be able to use the platform to spread awareness about her disease.
On Sunday, the Illinois mom did just that, launching Face Off for Scleroderma – a campaign that asks individuals to share makeup-free selfies to spread awareness about the disease.
More than a hundred people gathered in Highland Park for an official launch ceremony, while thousands joined in on social media.
“It was just a day to celebrate being who you are without needing to conceal yourself, and yes, the absolute underlying mission here is to raise funding and awareness for scleroderma,” says Goodman-Helfand, who has also written a book about the medical odyssey caused by her condition, with a portion of the proceeds going to scleroderma research.
“It’s taken on a life of its own, and [Sunday] was one of the most magnificent moments of my life, and the support I’ve received has been beyond my wildest dreams.”