What is FND

FND IS A PROBLEM WITH HOW THE BRAIN AND BODY SEND AND RECEIVE SIGNALS

Some rare illnesses are more commonly known for being difficult to diagnosis.

Here are a few we commonly see:

Elhers-Danlos Syndrome

Mitochondrial Disorder

Hemiplegic Migraine

Sneddons Syndrome

Celiac Disease

Vitamin Deficiencies B-12 & D

Is misdiagnosis possible?

Yes, misdiagnosis is a probability with all illness. In general, you will find an approximate 5% misdiagnosis rate amongst other illnesses. A systematic review from 2005 (Stone et al BMJ. 2005; 331: 989;doi:10.1136/bmj.38628.466898.55) concluded the misdiagnosis rate for FND had averaged around 5% since 1970 for Conversion Disorder. Keeping in mind, studies can be interpreted many different ways and different inclusion and exclusion scenarios can impact the results.

It is important that functional diagnoses derive from positive signs not negative test results. It is also imperative that not all symptoms are labeled functional and that assumptions are not made that functional symptoms are not co-existing or the result of organic illness.

Some in the medical community mistake medical uncertainty with “all in your head”. It is vital doctors not equate functional symptoms with “all in your head”and not insinuate one means the other.

This poor practice of assuming medical uncertainty always means a psychogenic cause often effects tens of millions of patients throughout the US and UK alone.[1][2][3][4][5][6]

Rare disease patients are at highest risk because of the vast unfamiliar symptoms stemming from the 6,800 known rare diseases. This number is sure to climb as new research and technology emerges.

Initially receiving incorrect diagnoses is a common experience for many rare disease patients. Of the total number of survey participants, 41% received at least one such misdiagnosis before obtaining the correct one. This results in inappropriate treatment.

Rare disease patients and organizations strongly feel there is a direct correlation between diagnostic delay and a misdiagnosed psychiatric diagnosis. “Patients who initially received a false psychological or psychiatric diagnosis experienced longer delays in diagnosis, suggesting that this type of diagnosis introduced yet an even greater barrier for patients before the quest for correct diagnosis could be resumed”, according to a 2009 rare disease report by EURORDIS. [13]

The report also states: “Respondents affected by TS and CF reported delays four times longer if they initially received a psychological or psychiatric misdiagnosis and MFS patients reported delays ten times longer in this same situation. In the case of psychological or psychiatric misdiagnosis, respondents reported delays 2.5 to 14 times longer than those who initially received a correct diagnosis.” [13]

When doctors are faced with medical uncertainty, they sometimes assume their patient’s cause of illness is psychogenic in nature. This assumption can lead to patients being denied medical care and receiving psychiatric care instead or no care at all.

Why is a correct diagnosis so important?

It is important all patients receive an accurate diagnosis as quickly as possible. A diagnostic delay causes unnecessary treatments and often worsening of the illness. Patients and their families are affected every time a patient is misdiagnosed.

From a medical perspective, a delay in correct diagnosis is primarily regarded as a cause of delaying appropriate treatment, unnecessarily worsening the disease state. In the day-to-day lives of patients and their families, however, the same delays in diagnosis can lead to numerous equally deleterious consequences, which include but are not limited to medical consequences, such as physical consequences, psychological consequences, cognitive consequences and death.

Roughly 22 million patients with autoimmune disease experience denial of care before accurate diagnosis. .[7]

Women, under age 55, are 7 times more likely than men to be mistakenly sent home from the ER in the midst of a heart attack. Once sent home they are twice as likely to die. [8] [9]

Most rare disease patients spend an average of 7 years in search of diagnosis [10], and during those years most mistakenly match criteria for psychogenic diagnoses [11]. There are 30 million rare disease patients in the US [12] and roughly another 30 million in Europe, according to Eurodis, battling with this problem. These figures make rare disease far from being rare. [13]

According to Eurodis 41% of rare disease patients in Europe are misdiagnosed at least once. [13]

Misdiagnosing or focusing solely on functional symptoms is a negligent decision on any physician’s part because the outcome can in its most extreme case be a deadly decision.

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