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

Woman's Outrage After Facebook Rejects Picture Raising Awareness Of Health Condition

Natasha Hinde— The Huffington Post UK

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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.

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.

Story continues below...

21 Rare Diseases

Stiff Person Syndrome(01 of21)

People who suffer from this acquired neurological disorder experience repeated, often painful, muscle spasms as well as muscular rigidity and stiffness. According to the National Organization of Rare Diseases, spasms can occur at random or they can be caused by something as seemingly benign as light physical contact or an unexpected noise. The cause of Stiff Person Syndrome isn't yet known, but symptoms can be stabilized with medication. Left untreated, however, a person can lose the ability to walk.

Gigantism(02 of21)

This disease, which according to the NIH is most often caused by a begnin tumor in the pituitary gland, results in an excess of GH, or growth hormone. This causes sufferers to grow abnormally large, not just in terms of height, weight but also organ size. It results in complications like delayed puberty, increased sweating, and secretion of breast milk.

Pica(03 of21)

Characterized as an eating disorder, Pica causes people to eat what the National Organization for Rare Disorders describes as "non-nutritive" things. That umbrella term can include (but isn't limited to) dirt, clay, paper, and paint. Interestingly, it's not unusual for young kids to experience transient pica as a kind of phase, and pregnant women are also known to develop temporary pica cravings. The cause? Unknown. But in order to be diagnosed with full-blown Pica, a person's symptoms must last for more than a month.

Maple Syrup Urine Disease(04 of21)

MSUD, which is passed down through families, is a life-threatening metabolic disorder passed down through families that stems from the body's inability to process certain amino acids, leading to a build-up of them in the body. According to the NIH, symptoms usually surface in early infancy and can include vomiting, lack of energy, seizures, and developmental delays. MSUD takes its name from another symptom -- the urine in affected infants smells like caramel or maple syrup.

Situs Inversus(05 of21)

Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. People with Situs Inversus typically wear some form of identification to help doctors in the case of a medical emergency.

Trigger Thumb(06 of21)

Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. According to the Mayo Clinic, it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.

Scurvy(07 of21)

Once the disease of sailors and pirates, scurvy does still exist in the United States, though predominantly in older, malnourished adults. It usually stems from a Vitamin C deficiency, which can result in gum disease, skin leisons, and swelling of the joints. (credit:Getty )

Wilson's Disease(08 of21)

This progressive genetic disorder causes sufferers to store excess copper in tissues, including the brain and liver. Though the Mayo Clinic says that the body depends on copper in order to use iron and sugar, too much of it in the body can have real consequences. Which is why sufferers of Wilson's Disease are prone to liver failure.

Foreign Accent Syndrome(09 of21)

According to researchers at the University of Texas at Dallas, this speech disorder causes people to experience a sudden shift in their accents and though it is known to be caused by things like brain trauma, conversion disorder, or multiple sclerosis, an exact reason behind the syndrome is unknown. Sufferers of FAS dramatically shift their speech in terms of timing and intonation, which often causes them to sound foreign, but they remain totally comprehensible. Documented accent shifts include from American English to British and from British to French.

Carcinoid Syndrome(10 of21)

According to the National Organization of Rare Diseases, about 10 percent of people with carcinoid tumors -- which the Mayo Clinic says are slow growing tumors that produce excess serotonin and usually appear in the gastrointestinal tract or lungs -- get this syndrome. It occurs only in patients whose tumors have metastasized to the liver. The symptoms? Wheezing, hotness, and extreme facial blushing.

Cyclic Vomiting Syndrome(11 of21)

Children and adults afflicted with CVS experience recurrent episodes of severe vomiting, which can last for days, followed by sudden periods of no vomiting. While kids are likely to experience more frequent attacks, adults's often last longer. To date, the cause of CVS is unknown.

Peeling Skin Syndrome(12 of21)

This obscure, genetic skin disorder does exactly what its name implies: causes sufferers to experience constant shedding of their skin. (In some patients, peeling is limited to the feet and hands.) Along with that, sufferers often feel itching and redness -- symptoms that can appear from birth or develop later in life. Although the exact cause is unknown, a mutation in the TGM5 gene has been identified in many sufferers.

Platelet Storage Pool Deficiency(13 of21)

This is a blanket designation for several rare platelet abnormalities, most of which lead to mild or moderate bleeding disorders. According to the NIH, the problem stems having limited granules -- the parts of platelets that, among other things, store ADP -- the energy released when a molecular bond is broken. That reduction in storage space inhibits the platelets' ability to secrete ADP in a speedy fashion, which is thought to be what causes the bleeding. Classic symptoms of a Platelet Storage Pool Deficiency are nosebleeds, excessive bruising, and profuse bleeding in surgery.·

ACDC(14 of21)

Only nine people in the United States are known to have this disease, which was just given a name in a recent study in the New England Journal of Medicine. ACDC, or arterial calcification due to CD73 deficiency, results in calcium build-ups in the arteries below the waist of sufferers and in the joints of their hands and feet. According to the NIH, the breakthrough discovery found that the disease is related to a variant in the NT5E gene.3

Conversion Disorder(15 of21)

This condition, which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·

Ochronosis(16 of21)

Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though scientists aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.

VLCAD Deficiency(17 of21)

This condition, which is caused by genetic mutations in the so-called ACADVL gene, keeps people from converting certain fats to energy. According to the NIH, the deficiency often presents during infancy in symptoms including low blood sugar, weakness, and lethargy.

Hairy Tongue(18 of21)

As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. According to the Mayo Clinic, the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. The NIH reports that hairy Tongue can also present as brown, yellow, or green discoloration. ·

Ochoa (Urofacial) Syndrome, or, Peculiar Facial Expression(19 of21)

This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. The disorder also includes an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. Though treatment does exist in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.

Eagle Syndrome(20 of21)

This syndrome, caused by a particular calcified ligament or elongated bone, frequently causes sufferers to feel that something is stuck in their throat. (Scientists don't know the reason behind said elongation/calcification.) Other symptoms can include ear and throat pain as well as difficulty swallowing. According to the NIH, it can be treated surgically or non-surgically with steroid injections and other anti-inflammatories.

Progeria(21 of21)

According to the Mayo Clinic, only around 130 cases of this devastating genetic disorder have been documented since it was discovered in 1886. Affected babies normally appear normal at birth, but within 12 months begin to have symptoms like hair loss and wrinkles. According to the Mayo Clinic, progeria is caused by a genetic mutation, but not one that's passed down through families; it's a chance event that affects only one egg or sperm. The average life expectancy for sufferers is 13.

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.

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