“My day to day is very difficult,” exclaims without hesitation Ana María Niztzschmamn, a 57-year-old Cordovan native of the town of Capilla del Monte. The reason is that she suffers from Ehlers-Danlos syndrome (EDS), a rare disease of genetic origin for which she has no cure. In Argentina, it is estimated that some 18,000 people live with this diagnosis. There are 10 different Ehlers-Danlos syndromes known.
Ana María began to suffer the difficulties inherent to this ailment when she was 9 years old, but she was only diagnosed a decade ago, which involved a whole journey through hospitals and doctors. Therefore, in her voice you can tell tiredness. “Ehlers-Danlos mainly affects collective tissue, but also all internal organs, because it is a collagen deficiency. My days are difficult, but they are sadder when you look for doctors and find nothing, ”she recounts in dialogue with PROFILE CÓRDOBA.
The woman has to undergo a surgical intervention, but as a result of her condition she has already been rejected by two sanatoriums, “because the doctors are not encouraged,” she says. She assures that they told her that her anesthesia would not work and therefore they cannot operate on her.
Ana María is very flirtatious. She likes to look good, to be made up. If anyone sees her, she would never imagine that she suffers from this condition. Her pain is internal. She uses a cane so that when the bus gets on, they give her the seat. Standing on the bus would be very hard. Even traveling sitting down is already very exhausting. In fact, when she must leave her home to travel for a medical checkup, she is an odyssey. “In addition to physical exhaustion, there is mental exhaustion, because I have to be constantly taking care that my body does not dislocate. Any movement, even the involuntary one, can make me dislocate, be it a knee, ankle, hip, shoulders, elbows, wrists, phalanges of the fingers… ”, she describes herself. As she talks she pauses and takes a breath. Hours before the interview she suffered a fall and is in bed. She has a bruise on her knee.
In addition to suffering from EDS, he has dysautonomia. “My brain doesn’t understand me: sometimes I want to walk and if I don’t ask my foot for permission, it’s like I stay static and that gives me some peace of mind knowing that if I’m going to fall, I’m going to do it more slowly,” she says. and laughs. She tries to find humor in her situation and not stay in regrets. That’s why she exclaims that, despite all her ailments, she chooses to smile. “There are days that I look in the mirror and say to myself ‘today I’m going to be fine’, that she chooses to smile, even though the pain never stops”, she affirms and her voice takes on a higher tone.
He has frequent dislocations and subluxations. She lives with it. He walks with anklets permanently, because the ankle comes off. For example, when the arm is dislocated, it remains hypermobile for three days. So bathing is a problem. Doing everyday things that seem simple, like going downstairs, is complicated for her.
She remembers that at the beginning, when she went to the doctor and they put her on the stretcher “she was like a weirdo. 20 or 30 doctors would come, they would push each other to touch me and sometime, without wanting to, they also dislocated me for touching me, ”she narrates. And she adds: “My adolescence was terrible, the worst time of my life. He even dislocated from sneezing. Now to sneeze I have to put myself against the wall”. He has no medication, he can only take vitamin C, but it is for the synovial fluid to be preserved.
“Within what is the Ehlers-Danlos, I have a large heart, it has extended as if it had been put in water, I have heart failure, my arteries have already reached the limit, I have a large intestine, hiatus hernia, both kidneys out of place, the liver complicated and now I have a lot of pain in the spine, I have scoliosis ”, he describes.
EDS affects the physical and the psyche. Life expectancy is short. “I’m already winning,” she says, and smiles again. And he says that as a teenager he liked sports a lot, but he couldn’t keep practicing them. “People are not empathetic,” he laments. Once in Córdoba she fell in the center and nobody helped her get up.
Why make SED visible?
The British actress and presenter Jameela Jamil (The Good Place and She-Hulk) told at the end of 2022 that she suffers from this rare genetic disease. In her social media posts she said: “Let’s raise awareness together about this issue and save some fucking lives!” Along the same lines, Ana María Niztzschmamn explains that she wants people to know about SED, through her teenage nephews Virginia and Lautaro, who suffer from it. “I don’t want them to go through what I went through,” she says. And she recounts: “The first diagnosis I had, in adolescence, was ligamentous laxity in the greater extremities. If they had diagnosed me correctly, today I would not have the heart and intestinal problems that I have”. For this reason, it is important to disclose EDS, since a diagnosis
Early saves lives.
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