What is Catatonia?
Catatonia is a severe neuropsychiatric disorder affecting movement, speech and complex behavior often involving disturbances is autonomic (involuntary) functions or affect (moods, feelings and attitude).
No one’s life should be lost to Catatonia.
How common is Catatonia?
Click on underlined statistics for sources.
Note: There may be variations in statistical prevalence due to lack of awareness and education about Catatonia.
The importance of proper diagnosis
Catatonia is NOT uncommon but is often missed or misdiagnosed. ​​
Without proper diagnosis and optimal treatment, Catatonia may cause a patient to lose their life as they know it, lose their livelihood, be institutionalized or die. With proper diagnosis and optimal treatment, patients are frequently cured and able to thrive.
Because it's various expressions are not well-known, it may not be included in the treating physicians' differential diagnoses when a patient presents with its symptoms. Although thousands of articles and books on Catatonia have been published, some providers still think of Catatonia as either the stuporous form of Catatonia often seen in movies like Awakenings or they associate Catatonia with schizophrenia. Awareness and education about the different expressions of Catatonia is necessary so patients can receive accurate diagnoses and access highly effective treatment options.
Catatonia disrupts normal physical and mental functions and can be distinguished from other conditions using a rating scale focusing on observable signs and symptoms. It typically comes on suddenly with behaviors that are out of character compared to the person's baseline. It has many expressions and a variety of signs or symptoms, including muscle rigidity, immobility, indifference to surroundings, mutism, echolalia (repeating other's words or phrases), delusions, psychosis, severe agitation or excitement, aggression and self-injury, loss of cognitive abilities, developmental regression, and/or inability to perform activities of daily life. A patient may not exhibit all of the symptoms. See Symptoms & Diagnosis
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A diagnostic challenge test using lorazepam may be warranted when a diagnosis of Catatonia is uncertain. It may also be prudent to perform additional testing to investigate underlying causes of the Catatonia. Additional testing may include blood tests, urine screens, lumbar punctures, EEGs and imaging.​
“We had no idea our family members had Catatonia.
When we learned that Catatonia had different expressions,
we were then able to get an accurate diagnosis and
access highly effective treatment options.”
The Catatonia Foundation Founders
What are the different forms of Catatonia?
Stuporous (Akinetic) Catatonia
When someone seems unable to move, is indifferent to their surroundings, has stiff muscles that are resistant to changes in position, does not speak or respond to questions, does not respond to painful stimuli, and/or has unusual body postures.
The need for awareness
There’s a saying that new physicians are taught when learning how to make a diagnosis. “When you hear hoofbeats, think horse, not zebra.” The principle is quite simple - the odds are the patient has the more common diagnosis than a rare, improbable one.
Awareness is crucial so that Catatonia is recognized as a horse, not a zebra. Catatonia is NOT an improbable diagnosis when a provider understands its signs and symptoms.
A member of The Catatonia Foundation's Medical Advisory Board shared that they are often asked why their institution has so many patients with Catatonia. Their explanation is that they do not have more patients with Catatonia, they just do a better job identifying Catatonia in their patients. The Catatonia Foundation's mission is to close the gap between providers with little or no understanding of how to identify, diagnose and treat Catatonia and providers with expertise in Catatonia. Our hope is that this will help patients receive an accurate diagnosis and effective treatment quickly.
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There are many reasons patients do not receive an accurate diagnosis of Catatonia, including:
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​​A lack of awareness of Catatonia symptoms and diagnostic criteria by healthcare professionals.
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Difficulty in assessing patients and applying diagnostic criteria in a brief visit.
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The overlap between the symptoms of Catatonia and other mental health or physical diagnoses.
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A lack of consensus on whether Catatonia is a syndrome that requires specific treatment or is a symptom of another medical or psychiatric diagnosis.
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Due to the severity of the illness, Catatonia is often seen by acute medical services who may have little or no knowledge of Catatonia.
"Catatonia is treatable once it's recognized."
- Dr. Max Fink
The Catatonia Foundation
We are a tax-exempt charitable organization whose purpose is to end needless suffering or death due to Catatonia through awareness, education, advocacy, support and research.
The Catatonia Foundation was created by five individuals who had family members or friends struggling with the symptoms of Catatonia. In spite of having access to excellent healthcare, their loved ones struggled to get a diagnosis of Catatonia. Once the diagnosis was made, it was often a long journey to receive highly effective treatment.
These five individuals all have expertise and experience in navigating access to healthcare.
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One is a physician.
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One is a lawyer, special needs and healthcare advocate, and health and trauma coach.
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One is the communications manager for one of the top cancer centers in the United States at a public health and science university.
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One is a nurse and retired administrator of a top medical school.
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One is a businessman with keen negotiation and advocacy skills.
Yet in spite of their backgrounds, it was not easy to help their loved ones get the care they needed. They searched and searched and eventually found healthcare professionals who had expertise and experience in diagnosing and treating Catatonia. This was not the end of their journeys as they had to overcome more obstacles to access effective treatment, including insurance, consent, hospital policies and limited access.
If the loved ones of these individuals - Jeff, David, Anja, and Alyssa - had not received a diagnosis of Catatonia and proper treatment, the outcomes would have been tragic. Two would likely have died and two would have been institutionalized for life. Yet their stories have happy endings. All of them are thriving now.
Our commitment
Our commitment is to help prevent other people dealing with symptoms of Catatonia from experiencing needless suffering - or worse. We provide information, support and hope for patients with Catatonia and their families. We bring awareness and education to the public and to medical and other healthcare professionals about the different expressions, signs and symptoms of Catatonia, how to identify Catatonia, how to make an accurate diagnosis and what highly effective treatment options are available.
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Disclaimer on Professional Advice
This website and its content and treatment resources do not constitute the practice of any medical, nursing or other professional health care advice, diagnosis or treatment. See Full Disclaimer here.