Catatonia...
An under-diagnosed medical disorder that is often mistaken for other mental health or physical illnesses. Catatonia has a high cure rate with an accurate diagnosis and proper treatment.
No one’s life should be lost to Catatonia.
Catatonia is not rare.
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 an under-diagnosed medical disorder that is often mistaken for other mental health or physical illnesses.
Catatonia is NOT a rare disorder. Because it's various expressions are not well-known, it may not be considered as a possible diagnosis by healthcare professionals when a patient presents with its symptoms. Although thousands of articles and books on Catatonia have been published, many clinicians still think of Catatonia as either the unresponsive 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 curative treatment options.
Catatonia involves a set of associated symptoms that disrupt normal physical and mental functions. It typically comes on suddenly and the behaviors are out of character for the person exhibiting them. It has many expressions and a variety of 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.
Catatonia has a high cure rate when patients receive an accurate diagnosis and optimal treatment. 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.
“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 curative treatment options.”
The Catatonia Foundation Founders
This is Catatonia...
Excited Catatonia
When someone has a rapid onset of delirium, they are disoriented, confused, and experience disordered stream of thought and impairment in cognition and memory. They may have restless movements, aggressive behavior, repeat words or phrases uttered by others, and/or continually repeat the same words, thoughts, and movements.
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 a rare, improbable diagnosis. There are many statistics cited in the literature that support this.
Unfortunately, accurate statistics on the prevalence of Catatonia are difficult to determine for the following reasons:
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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
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The overlap between the symptoms of Catatonia and other mental health 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
Who we are
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 treatment that would ultimately cure them.
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 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 curative 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. Each of them were cured of their symptoms of Catatonia and are now thriving.
Our commitment
Our commitment is to do what we can to prevent other people dealing with symptoms of Catatonia from experiencing needless suffering - or worse. We want to help patients with Catatonia and their families by providing information, support and hope. We are committed to bringing awareness and education to the public and to medical and other healthcare professionals about the different expressions of Catatonia, how to make a proper diagnosis and what highly curative 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.