Yasemin (2): Defying fate with tattoos

Christiane Fux studied journalism and psychology in Hamburg. The experienced medical editor has been writing magazine articles, news and factual texts on all conceivable health topics since 2001. In addition to her work for, Christiane Fux is also active in prose. Her first crime novel was published in 2012, and she also writes, designs and publishes her own crime plays.

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The mandala tattoo on Yasemin's chest is almost complete - like a blue-black tip on pale skin. It was one of the first of around 30 motifs that the young woman had. But it wasn't really that successful at the time. Now Yasemin has had it improved. The delicate pattern hides the end of the long scar that she has had since the first few weeks of her life. As a newborn, a huge tumor had to be removed from her heart.

Yasemin Seber suffers from the very rare Proteus syndrome. Some parts of the body grow excessively and numerous tumors often form: How does she manage to maintain her courage to face life despite the setbacks? Will therapy be found that will alleviate the worst ailments? You can find out what happens next every 14 days at - or on Instagram: yasemins-verrueckte_welt

“I don't like my body that much,” says Yasemin, who is tall and slim - a figure that many dream of. Yasemin herself feels differently. “Everyone else only sees my guards.” But she herself sees the scars from the many operations, knows about the threatening tumors that are growing inside her, remembers all the pain. She has been struggling with the rare Proteus syndrome since she was born.

Shaping your own fate through your body

The tattoos are also a way to shape the body, which often appears to her more as an opponent than a friend, according to her ideas. To a certain extent she wants to be the mistress of her own fate again. Her hands, five of which had to be amputated, are also partially tattooed: "I can find myself more beautiful with the tattoos," says Yasemin.

It is Tuesday, August 24th, a day on which you can feel all over Germany that summer is slowly saying goodbye. How has the 30-year-old fared since our last conversation in July (“Pocahontas with five fingers”)?

The breast cancer drug Alpelisib, which should also shrink their tumors, had already been reduced by the doctors because of the serious side effects. The main goal of the treatment was a tumor that clasped her larynx and constricts her air.

But in the meantime, she reports, the doctors have stopped taking the drug altogether - at least for the time being. Because whether the health insurance will continue to bear the costs for the expensive and very stressful therapy is open.

Between hope and fear

Yasemin looks forward to the day on which the decision will be made with hope and fear. According to the deal, the health insurance company will only continue to pay after the end of the six-month test phase if the tumors respond to the therapy.

This time runs out now, at the end of August. So far, however, the tumors have not shrunk. Is it because the drug isn't working? Or is it not working because you dosed it down?

"I'm already wondering whether I might have endured the side effects better," says Yasemin. But they were just too severe: an itchy rash all over the body, swollen lips and suddenly onset of diabetes. And to top it all off, a deep languor. “I hid on the couch and thought that was it,” she says.

Nevertheless, at first she does not tell the doctors how bad she is - out of concern that they will then stop the therapy. But that is not hidden from them. "They scolded a bit," reports Yasemin. Nothing is gained if a drug works, but the patient dies from the side effects.

A new attempt at therapy

It is already the third attempt at therapy against the tumor in the throat that threatens to fail. Before that, the doctors had tried sclerotherapy, among other things: The tumor is treated with a method that would otherwise obliterate varicose veins.

An untested practice in her case, but Yasemin was so bad before that the doctors had to take a risk. Every respiratory infection hits her heavily on the lungs. “I don't have normal colds, just escalation,” she says. The last time she had pneumonia, she had to be ventilated. In an artificial coma, between unconsciousness and twilight, she slipped into delirium: She was plagued by terrible delusions.

Wrong memories

When she wakes up, she is absolutely convinced that her husband Dennis had a serious accident. “The worst part was that I built the dreams into my memories. Then I knew they weren't real, but it still felt like that, ”she says.

But sclerotherapy does not shrink the tumor. An attempt to tame him with a drug that is otherwise used in transplant medicine also fails. To do this, her immune system had to be knocked out. Isolation and wearing a mask were the order of the day: "Back then everyone looked at me suspiciously, today everyone is wearing a mask," she jokes. “I was a trendsetter there,” she says and laughs.

Treatment odyssey is usually preprogrammed

Such treatment odyssey is more the rule than the exception in rare diseases. There are seldom drugs that are specifically developed for treatment - the calculation of research costs and income simply does not work out for so few people affected.

In addition, the courses and thus also the complaints are very different within a clinical picture. And so the doctors are always on the lookout for creative solutions, for therapy options that are not intended for other diseases and that could also help their patients. The therapy plan becomes a field of experimentation.

Get out of the comfort zone

Yasemin has been feeling better since she stopped taking the medicine. There was even a little bike tour in the summer vineyards. Despite e-bikes, you, who used to do sports enthusiastically, swam and skate, run out of breath on every small incline. “Afterwards I was totally exhausted,” she reports. With the tour, she wanted to get out of the comfort zone, build up a bit of stamina, do what is possible. “Sometimes I can't even walk into the kitchen without gasping for air,” she says.

Nevertheless, she tries to take as much from life as possible. “I don't want to spend my most precious years on the couch,” says Yasemin.

The next operation

"I try to enjoy this time with fewer complaints as best I can", Yasemin posts on Instagram ("yasemins_verrueckte_welt"). On September 10th, she had to undergo another operation: the so-called carpal tunnel was operated on again in her wrist. Yasemin calls the procedure “free shoveling”.

Bottleneck in the wrist

The carpal tunnel is a bony passage through which a nerve runs in the wrist, via which the fingers are controlled. It too is unnaturally thickened because of the Proteus syndrome in Yasemin. If the passage becomes too narrow, the result is increasingly unbearable nerve pain that radiates into the hands.

Master Yoda as a companion

Yasemin will accompany a button-eyed baby Yoda, whom a friend recently crocheted for her, to the hospital. Yasemin is more of a Disney fanatic than a Star Wars fan, but the cute little guy has done it to her. One thing is certain: She can still use the Jedi Master's calm fighting spirit very well on her way.