The story of a Swedish woman in her 20s who suffered from Ehlers-Danlos Syndrome (EDS), but was diagnosed after 21 years. When 21-year-old Lina Arnberg, who lives in Sweden, was young, she experienced bruises all over her body and severe pain in her joints. Her school teachers even suspected her of child abuse. No one has been able to clearly explain why these symptoms appear, and so far, doctors have ignored the symptoms, saying they are due to stress. Recently, American newspapers such as the New York Daily and the New York Post introduced the story of her illness, which was relieved to find out the identity of her illness after 21 years.
In October of last year, Arnberg, who did not have a specific diagnosis for the disease, was diagnosed with Ehlers-Danlos Syndrome (EDS), a rare genetic disease, as the cause of severe bruising all over her body for the first time in 21 years. If you suffer from this disease, your joints become weak or saggy and your skin becomes very sensitive, causing it to bruise or tear easily. Although there is no cure, Arnberg is relieved to finally have a clear diagnosis of the disease.
“I can’t remember a time in my life when I wasn’t in pain,” says Arnberg. “Despite having sensitive skin, bruises, and chronic back pain, for a long time whenever I complained of pain, doctors told me it was due to stress.” “I just said that,” he said.
Even simple daily activities, such as having a conversation or taking a shower, were so tiring that Anberg had to take a break immediately, and at times suffered from stomach cramps and nausea.
He said, “Ever since I was young, I had bruises all over my body to the point where my kindergarten teacher asked my parents if I was okay at home. I developed an eating disorder at the age of 8 due to stomach problems such as pain and constipation, and later I was diagnosed with anorexia and almost lost my life.” He recalled.
As she became a teenager, her symptoms worsened, and new symptoms appeared, including unstable heart rate and sinus tachycardia. The medical staff even diagnosed him as a hopeless case as his health was so bad that he could not recover from anorexia.
In October 2023, Arnberg visited the Ultuna Health Center in Uppsala, Sweden, with diagnostic data containing his medical history and symptoms, and there his disease was confirmed.
“My doctor evaluated my hypermobility and reviewed all the different criteria for EDS,” Arnberg said. “I felt relieved that after 21 years, someone was finally telling me my symptoms were real.” I remember crying for a few days, but it wasn’t sadness.
EDS is estimated to occur in 1 in 5,000 newborns worldwide, and there is no cure for the 13 connective tissue disorders. Bruises easily, joints become overexercised, skin loses elasticity, and tissues become weak. It is reported that abnormalities in the collagen gene are the cause, and it is inherited through that gene.
Symptoms vary depending on the patient. The skin is as weak as a sheet of paper, easily torn by minor trauma, and wounds occur mainly on the forehead and shins. The joints are also flexible, so they are prone to dislocations and are prone to heart disease and vascular disease.
“EDS presents with many comorbidities, so it’s important to recognize that it’s more than just bending the body and stretching the skin,” Arnberg said.
Arnberg now receives treatment options such as physical therapy, bone-strengthening vitamin D supplements, and medications for joint pain to help manage her symptoms. Although he is now in good health and has recovered from his eating disorder, he still suffers from gastrointestinal problems.
“For me, the most difficult part of EDS is not the disease itself, but having to make appointments at multiple hospitals,” he said. “I have to plan my week around hospital appointments.”
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Reporter Jeong Eun-ji (jeje@kormedi.com)
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2024-01-08 02:43:00
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