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What you need to know about CRPS — the often ignored condition at the heart of Netflix's 'Take Care of Maya'

Jul 6, 2023, 04:39 IST
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Maya Kowalski.Netflix
  • A new Netflix documentary tells the story of Maya Kowalski, who has complex regional pain syndrome (CRPS).
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  • CRPS is a rare chronic pain condition that affects less than 0.06% of the population.

    The new Netflix documentary "Take Care of Maya" chronicles the story of Maya Kowalski and her family after a complicated medical diagnosis led to a CPS case, a court battle, and ultimately a family tragedy.

    After a severe asthma attack in 2015, Kowalski was diagnosed with a rare form of chronic pain known as complex regional-pain syndrome (CRPS) when she was just 9 years old. Her symptoms included muscle weakness and burning sensations.

    Here is what we know about the condition.

    CRPS is a painful condition, usually triggered by an injury

    CRPS is relatively rare, affecting only 200,000 people each year in the United States, according to the Cleveland Clinic — or roughly 0.06% of the population.

    CRPS is triggered by injury, typically to the arm or leg and results in "changing combinations of spontaneous pain or excess pain that is much greater than normal," according to the National Institute of Neurological Disorders and Stroke.

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    "Your sense get ramped up so if a drop of water touches your skin, it can feel like somebody's jabbing you with a knife," Kowalski's doctor, Dr. Anthony Kirkpatrick, said in an interview with People.

    CRPS is thought to be caused by damaged or malfunctioning small C-fiber nerves which extend throughout the body, and relay sensations like temperature, burning and itchiness up to the brain. Doctors still aren't sure why some people develop CRPS, while others with similar injuries do not.

    C-fiber nerve damage can be debilitating. Apart from symptoms like spontaneous pain and burning, people with CRPS may also experience changes in skin color and texture, changes in skin temperature, swelling, and rapid or nonexistent hair and nail growth, according to Cleveland Clinic.

    CRPS can happen to anyone, but is more common in women who are younger than 40. It is rare in the elderly and in young children, like Kowalski. However, people with preexisting inflammatory and autoimmune conditions, like asthma, are more likely to get CRPS.

    CRPS is difficult to diagnose and treat

    The unusual symptoms can make CRPS difficult to diagnose, including for Kowalski. One doctor questioned whether her symptoms were real, and instead accused her mother of making her sick, a condition called Munchausen by proxy. The accusation led to Kowalski being kept from her parent's custody for months. Her mother, Beata Kowalski, eventually died by suicide after the accusations.

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    Even when correctly diagnosed, there is no known cure for CRPS. Treatment for CRPS is focused on managing pain and improving functioning. For most, CRPS gradually improves with time and eventually goes away as the C-fiber nerves heal. But for some, CRPS is a life-long condition that is profoundly uncomfortable and disabling.

    When Kowalski was first diagnosed, she was given low doses of the anesthetic ketamine. Ketamine is a controversial treatment that is still being studied to see if it helps with CRPS, and is usually only given in the most severe cases that don't respond to other forms of treatment.

    For Kowalski, treatment with ketamine was initially helpful, but stopped working, so her doctor recommended that her and her family fly to Mexico for an experimental medical procedure in which Kowalski was put into a 5-day ketamine induced coma. The procedure worked, but her symptoms relapsed in October 2016.

    Although the U.S. Food and Drug Administration has not approved any medication to be marketed explicitly for treatment of CRPS, pain medications like aspirin, ibuprofen and Tylenol, as well as steroids like prednisone are typically prescribed for pain management or to reduce inflammation. In more severe cases of CRPS opioids, Botox injections, or other medications might be used.

    Kowalski, now age 17, said that her CRPS symptoms are sometimes so painful they wake her up at night. Kowalski has not received any additional ketamine therapy, but has undergone water therapy and stated that intense exercise helps keep her pain at bay - she recently took home a first place ribbon in a figure skating competition, The Cut reported.

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    Other treatments for CRPS include physical therapy and talk therapy to manage the psychological stress of the condition.

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