"This Isn't Just a Skin Disease, It's an Indescribable Suffering": Interview with a Mother Who Founded an Association

When little Tzipi was born 23 years ago, Shulamit Borshtein had no idea her sweet baby would completely change her life. She was already an experienced mother of four adorable children, Tzipi's older siblings, and a world-spanning quest for a cure for her youngest was certainly not part of her plans. Had you told her then that she would one day lead a large organization she created, she would have likely looked at you in disbelief. But life, it seems, is full of surprises.

"It started around the age of one month," she recounts. "Suddenly, a strange rash appeared on my sweet baby's skin. It wasn’t just any rash but a severe one all over her body, with secretions and intense itching that made her scratch until she bled. Ever seen a three-month-old baby scratching helplessly, with no way to help her? That's what happened to my daughter, and it only got worse."

"The Doctors Had Nothing to Offer"

Borshtein approached dermatologists who suggested various creams and therapeutic treatments. It didn’t help. When Tzipi was four months old, she was hospitalized for the first time. "Her entire body was covered in a red, itchy rash that emitted unpleasant fluid," Borshtein remembers. "And the doctors had nothing to offer. They didn’t even know what to call it."

After three hospitalizations in four months, with the doctors, Shulamit, and her family at a loss to explain or alleviate the itchy rash, Shulamit realized she needed to find a solution herself. Someone recommended a specialist in alternative medicine in England, so Shulamit, seeing no other option, decided to go.

"The idea was to go for six weeks, undergo treatment, and return," she recounts. "I left three children at home and took two with me, Tzipi and her older brother, who was still a toddler. It wasn't easy, but I knew I had to help my daughter. There's nothing worse for a parent than seeing their child suffer. That doctor turned out not to be the one meant for us, but eventually, we turned to hospitals and clinics in England and finally received a diagnosis. Tzipi was suffering from atopic dermatitis."

Atopic dermatitis, also known as eczema, is an inflammatory skin disease characterized by severe dryness, red rashes, and intense itching. It manifests in large skin areas covered with red rashes, affecting skin folds in the elbows (inner part), outer arms, folds behind knees, lower back, cheeks, around eyes, and scalp. The itching can be severe and disturbing, causing sufferers to scratch until bleeding, leading to injury, pain, and worsening of the condition due to infections. For infants and small children, the suffering is especially intense as they struggle to control the itch.

The disease prevalence among infants is high, with about 50% developing eczema in their first year. An additional 30% will develop it between ages one and five, though over time, symptoms often significantly improve, and periods between flare-ups decrease. About 80% will recover by adulthood, while the remaining 20% will deal with it lifelong.

Twenty years ago, awareness of the disease in Israel was low, and even doctors were unfamiliar with it and its symptoms. Today, Borshtein reports, the situation has greatly improved. When asked if there's a miracle cure or a wonder cream to help those suffering from atopic dermatitis, she sighs.

"Crying Out of Frustration"

"You’re not the first to ask," she says. "Every parent approaching our organization asks this. So I want to make it clear from the start. There is no miracle cream, nor a miracle solution. But as we understand and learn more about it, we realize how it operates. There are many triggers for atopic flares. It depends on the weather, pollution, scents, and food, and each person with the disease must learn their triggers. Awareness adds a lot, and it’s one of our primary goals to advance in our organization. It’s crucial for people to understand this isn’t just a skin disease; it’s an indescribable suffering. When my daughter arrived at the hospital, it was after all hope seemed lost. The red and secreting rash oozed pus, and the itching was unbearable. When she was a baby, she lost crucial proteins and minerals, leading to critical deficiencies. Some who are unfamiliar with atopic dermatitis argue it’s "just a skin condition," so let me give you an example that just scratches the surface of the suffering. Imagine 23 mosquitoes biting you relentlessly, all over your body. There's no way to brush them off, and no way to alleviate the intense itch. For a small baby, there's nothing to do but cry and cry in frustration."

In Borshtein's daughter's case, the diagnosis was just the beginning of a worldwide quest to find a treatment for her. The short stay in England prolonged, and shortly after, the whole family moved to England to be close to medical centers. Borshtein traveled with her daughter to Switzerland, France, and Germany, visiting hospitals, clinics, and private practices, trying both alternative and conventional treatments.

"In every place, we learned something," she says. "My knowledge of the disease expanded, and I learned from parents of suffering children who shared changes that helped them. When Tzipi was three, we traveled to the U.S., to a medical center in Dallas, where she was in an allergen-free environment, and there was a significant improvement. We saw clearly it helped, though it was impractical long-term, as you can’t raise a child in a lab-like safe and sterile environment all her life. However, I then realized part of the treatment isn’t just addressing the disease symptoms but also preventing and protecting from potential flare-up triggers."

When the family returned to England, they moved to a home specially adapted for little Tzipi, allergen-free. No carpets, curtains, upholstery, or sofas. Mattresses were covered with mite-resistant protectors, each room had an air purifier, and the air entering the house was filtered. A sealed door separated the kitchen from the house, preventing the passage of food odors Tzipi was allergic to.

"Her condition greatly improved then," Borshtein recalls. "She went to school and was nearly like any normal child, with almost no flare-ups and no hospitalizations. After 14 years in England, we returned to Israel, and here, two years later, her atopic dermatitis flared up again."

"Within a Short Time, 50 Families Contacted Us Begging for Help"

Soon after, Tzipi needed hospitalization again for her condition, and the painful routine of bandages and ulcerative, itch-inducing wounds returned. After three hospitalizations, Borshtein decided to go to Davos, Switzerland, known as a healing city for those with atopic dermatitis, hoping for improvement. By then, she was already in close contact with other families of children suffering from the condition, sharing tips and amassed medical knowledge. When they heard she was going to Davos, more families asked to join. This was the first spontaneous and impromptu camp she organized, which was a huge success.

Upon returning to Israel, Borshtein decided that formalizing the effort might be best by establishing an organization to assist systematically. "I published an ad seeking volunteers," she recounts. "I wanted to open a small foundation with a few volunteers familiar with atopic dermatitis to share their knowledge. Volunteers didn't come, but soon over fifty families registered with our organization, all with children suffering from severe atopic dermatitis, begging for help. That was the initial core of "Kumi-Ori," which became the Israeli Association for Atopic Dermatitis."

Borshtein, a psychotherapist by profession, shares that over the years, she understood the immense power of professional knowledge and support directed at children and their families, who undergo a tough challenge. She began organizing weekly newsletters and recruited doctors and professionals to advise and counsel families. As word about the organization spread, more and more families reached out. Today, about 1700 families are registered, with thousands of parents and sufferers actively participating in the organization’s groups and forums.

Do you think awareness of atopic dermatitis has changed since your daughter was born?

"Definitely. There’s been a huge change. First off, there are more and more patients today. Whether it's due to the Western lifestyle which is more exposed to pollutants than before, or because awareness has risen. Previously, when an atopic patient visited a dermatologist, they’d prescribe a cream and had no additional information to provide. Today, there’s so much activity, knowledge, and professional forums, it’s all approached differently. There’s no comparison to the situation when my daughter was born, and I was groping in the dark because no one knew what she had."

Has there been progress in medical treatment as well?

"Recently, a biological drug named Dupixent was approved; it’s indeed very costly and hard to obtain approval for, but it still brings hope for some patients. However, there’s more awareness among doctors, unlike before, even if there’s still room for improvement. What’s most important is realizing that besides alleviating symptoms, it's possible to prevent and ward off the triggers. It’s crucial to grasp that treating just the flare-up symptoms until they fade isn’t enough, as a large part of managing atopic dermatitis is in prevention. Just like a diabetes patient can’t rely solely on insulin but must also monitor an appropriate diet, so must atopic patients remember that treating just the rash until it disappears isn't sufficient, as if the triggers aren't addressed, it can recur."

Borshtein shares that over the years, some control has been achieved over her daughter's atopic flare-ups. Today, she is married with a lovely child yet still suffers from disease outbreaks. She isn’t the only one suffering from atopic dermatitis, but unlike her early childhood, she and her family are not alone. Every family reaching out to the organization, Borshtein states, receives comprehensive and professional support, and even participates in parental support meetings held every few weeks.

In recent years, a significant part of the organization's activities is the annual summer trip to the Swiss resort town of Davos, for six weeks. The unique climate of the Alps, Borshtein explains, is a key component in the healing of atopic sufferers, restoring the skin's balance. Last year, 80 families participated in "Kumi Ori"’s camp. The photos Borshtein presents are undeniable proof of the trip's success to Switzerland. There’s no comparison between the "before" and "after" pictures.

Borshtein shares that as a psychotherapist, a large segment of her activity is devoted to emotional well-being. "It’s crucial to build the child up and provide them tools to handle the illness, without succumbing to self-pity," she explains. "Often, the response from society isn’t supportive and understanding. Many times, mothers of the children encounter significant judgment. Some well-meaning individuals see the child, all covered in rash, and assume it’s neglect, while their valiant parents are running from doctor to doctor, trying to find a cure. I myself experienced this more than once. My call to people is: be sensitive! Remember that children suffering from atopic dermatitis are keenly aware of their appearance, and you need to see the child inside, not just the rough, blemished skin outside. And to parents and children in this fight, I'd like to say: we have a role. It's not just a hardship we've faced, but a special challenge we’ve been chosen for. We can grow into better and more understanding people, each on their path, and that’s what gives us strength to endure and move forward."