LIFESTYLE

Woman With Scleroderma, A Rare Skin Disease, Describes 'Emotional Blow' After Facebook Rejects Photo

13/08/2015 14:02 BST | Updated 13/08/2015 14:59 BST

A woman with a rare disease that causes red and purple blotches to come up across her face and body, has told of her horror and embarrassment after Facebook rejected a photo of her.

Lisa Goodman-Helfand, 40, is incredibly conscious of her condition and wears makeup - three layers of foundation, to be precise - everywhere she goes to hide her disease.

When Helfand, from Illinois, bravely posted a photograph of her face without makeup to Facebook in an attempt to raise awareness of scleroderma, she was delighted to see that her post had been shared hundreds of times.

To further her reach more, Helfand wanted to create it into a Facebook advert, which she'd pay $20 for. But was left shocked when Facebook rejected the request.

lisa helfand

Chanel, 23 (left) and Lisa, 40 (right) both suffer from the same condition.

The story behind the image above, which Helfand shared on Facebook, is that both women suffer from the same autoimmune disease, scleroderma.

The condition results in hard, thickened areas of skin and sometimes problems with internal organs and blood vessels.

According to the NHS, there's no cure, but most people can lead a full, productive life.

Helfand (on the right) is pictured next to a woman named Chanel, 23, whose condition has taken more of a toll on her internally, rather than externally - she is facing multiple organ failure.

Speaking to People about the image, Helfand said: "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. 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."

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After posting the story behind the photograph on Facebook, Helfand wanted to create an ad to broaden her reach and raise awareness of the disease.

But Facebook 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."

In a blog post about her ordeal, Helfand explains how she managed to muster up the courage to hit the 'publish' button and send it out to the world, only to be met with rejection.

"I have written extensively about how my disease, scleroderma, has eroded my self-esteem, body-image, and sense of self-worth since the age of ten," she writes.

"After 30 years of going to great lengths to conceal my face, I put it out there to illustrate how much more there is to people than what we see."

After reviewing the site's policies to see if she'd missed something, Helfand wrote to the social media site to ask them to put the ad up.

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21 Rare Diseases

She wrote: "My ad is to spread awareness for a rare autoimmune disease; scleroderma. These two pictures represent the different ways that scleroderma impacts patients. I ask that someone in your department please read the article and explain why it was not approved.

"This is not a 'before and after' type ad. It is a serious article on a serious disease. Thank you."

A member of staff from Facebook replied saying that her ads weren't accepted "because of the image used".

"Please note that we don’t allow images that promote an ideal body/physical image (i.e. before and after images). If you’d like to create new ads, please make sure to choose an image that complies with all guidelines," they said.

Helfand says Facebook's rejection of her ad was an "emotional blow", particularly as her face has been "rejected" by a human as well as an automated system.

But, turning her negative experience into a positive, Helfand launched an event called Face Off for Scleroderma, which encouraged people to share makeup-free selfies on social media with the hashtag #sclerodermaselfies to raise awareness for the cause.

Since the event took place, Helfand has managed to raise over $1,800 (£1,151) for the Scleroderma Research Foundation.

Helfand said: "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.

"The support I’ve received has been beyond my wildest dreams."

We have reached out to Facebook for comment and are waiting to hear back.