Statistics for Dysautonomia Diagnosis:
The average time to a diagnosis is 6 years 1.
83% of patients are initially incorrectly diagnosed with neuropsychiatric disorders before getting an appropriate diagnosis 2.
1,2 Dysautonomia International survey of more than 400 dysautonomia patients 2014
Without a diagnosis nothing much happens in healthcare, on the other hand, if a diagnosis is incorrect, whatever the doctor does is going to be at best ineffectual and at worse life threatening.
An accurate diagnosis explains what ails a patient. It provides the cornerstone for medical treatment, establishes a boundary against abuse, makes it possible to get disability support where needed and in the educational setting, paves the way for accommodations, allowing teenagers and young adults to complete their education.
The sooner a patient with dysautonomia receives an accurate diagnosis, the sooner appropriate treatment can start. Dysautonomia patients lose years of their lives due to diagnostic delay. For instance, a teenager incapacitate by dysautonomia at the onset of puberty will over the next six years miss out on the whole of high school. That time can never be regained and nothing can make up for that loss.
Even if the treatment is non-pharmaceutical like physical rehabilitation, increased salt intake and increased fluids, knowing the diagnosis will make it easier to stick to the regiment. It is very difficult for a patient the stick to an exercise program while battling multiple symptoms because a doctor felt it “might be dysautonomia.” There are also more than 20 medications used in the treatment of dysautonomia, but without an accurate diagnosis the dysautonomia patient does not have access to these.
Furthermore, when considering misdiagnosis and in particular how readily doctors will go for the neuropsychiatric diagnosis when it comes to dysautonomia, the back box suicide risk warning on certain anti-depressants is there for good reason. In this case, a misdiagnosis can be a fatal mistake.
Because dysautonomia is often characterised by extreme fatigue, vertigo and cognitive impairment these symptoms can lead to accusations of laziness, malingering and attention seeking. A diagnosis provides a boundary against this kind of emotional abuse.
Dysautonomia is debilitating leaving many adults unable to hold down a job – single moms unable to pay their rent and to provide for their children. Without a diagnosis these people are unable to apply for disability benefits; neither private nor the meagre South African government disability grant. Many dysautonomia patients find that once they have walked from the parking lot to the supermarket they are so symptomatic that they cannot complete their shopping. Even applying for a disability parking disc, will require a diagnosis.
Dysautonomia affects many teenagers and young adults and this is exactly the time of life when people complete their education. Many dysautonomia patients have cognitive impairments (brain fog). Reading becomes very difficult and their processing speed, concentration and memory also get affected. With a diagnosis, neuropsychological test can be done and the results can be used to apply for educational accommodations. This prevents exclusion from educational opportunities.
Section 27 of the South African constitution provides that everyone has the right to access to health care services. A lack of diagnosis violates this right leaving compromised dysautonomia patients without health care for their condition. Looking further at the South African Bill of Rights, a lack of diagnosis impacts the right to education, the right to social security and because it leaves patients vulnerable to abuse, it also impacts their right to human dignity. Diagnosis is not just a nice to have pursue or denied on a doctor’s whim, it is a human right.