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MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

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Planning & Preparation

Medical Child Abuse

Unfortunately, Mito patients and families often become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and Medical Child Abuse allegations. We hope this content can help families better navigate the medical system and feel more equipped to respond to such claims should they arise.

To be sick with a rare disease and to be doubted by medical professionals as to the truthfulness of symptom reporting and disease progression is absolutely devastating, especially where questions of parental fitness and child custody start to arise. It is MitoAction’s hope that the pages below will help

MitochondrialRelated to the mitochondria. disease varies greatly in its presentation and affects a wide range of body systems and organs. Testing is not clear-cut and is continuously evolving, and most practitioners are not familiar with the spectrum of possible symptoms. As a result, Mito patients and families become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and Medical Child Abuse allegations far more frequently than those with more well-described diseases. Hospitals are often too quick to separate children from parents suspected of Medical Child Abuse, adding even more stress and trauma to an already difficult situation.

Moreover, virtually every adult mitochondrial disease patient has experienced questioning from medical professionals regarding a potential psychological underpinning for their symptoms, which often can delay diagnosis for months or years. Claims that adult symptoms are “psychosomatic,” “malingering,” “factitious,” “functional neurologic” or “somatoform” are hugely detrimental to patients and families and bring with them tremendous psychological and physical consequences.

What are “Munchausen Syndrome” and “Munchausen Syndrome By Proxy”?

Munchausen Syndrome, now listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as “Factitious Disorder Imposed on Self,” is an adult psychiatric condition in which a person fakes symptoms of illness in order to draw attention to him or herself. When a parent or caregiver fakes a child’s illness to garner attention and sympathy, the disorder has historically been known as “Munchausen Syndrome by Proxy” (MSBP), and now is called “Factitious Disorder Imposed on Another” in the DSM-5. While rates of occurrence are very difficult to determine, Munchausen Syndrome is thought to have a prevalence rate of less than 1% and Munchausen Syndrome by Proxy is exceptionally rare, with a prevalence rate of 0.5 to 2 per 100,000.

What is Medical Child Abuse?

Medical Child Abuse (MCA) is a recently defined form of child abuse in which the primary caregiver (usually a parent) is accused of “overmedicalizing” a child. The caregiver is accused of falsifying a pediatric medical condition or exaggerating symptoms, which often leads to the child undergoing a number of unnecessary and potentially harmful hospitalizations as well as invasive procedures and tests. Intent of the caregiver no longer needs to be considered for an allegation to be brought against a parent; accordingly, more and more families are falling under the MCA umbrella.

Development of MitoAction’s Advocacy Task Force

While claims of Munchausen Syndrome and MSBP have long plagued the mitochondrial disease community, the issue of Medical Child Abuse in the Mito community came to a head in 2013 when a family caught in the middle of a diagnostic dispute between two hospitals lost custody of their child with a presumed mitochondrial disorder for more than 15 months. With similar cases cropping up around the country, MitoAction empaneled an Advocacy Task Force comprised of medical professionals, attorneys, adult patients, caregivers, and parents who had themselves been accused of Munchausen’s Syndrome by Proxy or Medical Child Abuse. The goal of the Advocacy Task Force is to create educational and awareness materials that would address the concerns of the mitochondrial disease community with respect to such allegations.

The materials on these pages are the product of the Advocacy Task Force’s research, personal experiences, debates and discussions. In no way should the suggestions contained herein be construed or substituted for professional legal or medical advice. MitoAction is by no means responsible for any accusations, legal actions, damages or adverse judgments received by site users due to use of or reliance upon these materials. To view MitoAction’s complete Terms of Use, please click here.

Medical Child Abuse Resources

Mito Navigator Toolkit

This Toolkit can help patients, families and caregivers better navigate the medical system and feel more equipped to respond to any issues should they arise.

Learn More

Social Media & Online Interactions

Social media can help you connect with others and find much needed support, but unfortunately it can also be used to build a case for “attention-seeking behavior”.

Learn More

Responding to Allegations of Medical Child Abuse

If you’re facing false allegations of medical child abuse, you need a plan of action. Start here in developing one.

Learn More

Developing a “Medical Home”

A “medical home” is a repository of medical records data, overseen by your primary care physician or pediatrician.

Learn More

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Expert Series: Serial Casting and Toe Walking
Presented April 25, 2025

P.O. Box 310
Novi, MI 48376
(888) 648-6228
info@mitoaction.org

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