Recently, I have come across a letter (via Defying Gravity) that was written by a sufferer of POTS, Stacy Reed, and her doctor, Thomas Ahern, regarding the debilitating symptoms of Postural Orthostatic Tachycardia Syndrome.
This letter would be extremely beneficial to those attending college who want their professors or their disability services office to gain a better understanding of what they suffer from.
As we all know, Dysautonomia can be rather difficult to fully explain to others, and sadly...we are not always taken seriously.
This letter is a professional document that can help anyone better understand our condition.
Our life. Our struggles.
RE: Postural Orthostatic Tachycardia Syndrome (POTS)
To Whom It May Concern:
I have been diagnosed with Postural Orthostatic Tachycardia Syndrome. This is a form of Dysautonomia, which is a malfunction of the autonomic nervous system, the system that regulates all of our automatic functions, such as heart rate, blood pressure, temperature regulation, blood flow, etc.
Patients with Dysautonomia often present with numerous symptoms. These include: loss of consciousness, a feeling that one is about to pass out, intermittent rapid heart rates, very low blood pressure, or significantly elevated blood pressure. Patients also describe symptoms of increased anxiousness, excessive sweating, recurrent headaches, dizziness, low-grade fevers, constipation, diarrhea, abdominal pain, and nausea.
Another symptom that impacts one’s school and work performance is the presence of periods of impaired cognitive function. Individuals who experience this often describe it as a “brain fog.” Patients with Dysautonomia are extremely sensitive to warm environments; avoidance of these environments is suggested. Prolonged periods of standing are extremely difficult, so patients may request to sit or lie down during class or work. As a result of these symptoms, individuals may also present with depression.
Intermittent absences from work and school are common.
It is imperative that patients have access to their prescribed medications, as well as fluid supplements and salty snacks. Access to fluids are necessary during class or work.
Other accommodations requested of schools on behalf of a patient include:
- Avoidance of known symptom triggers when possible.
- Permission to record classes and/or lectures, which can be reviewed at a later time.
- Longer test-taking times, 50% greater time.
- Communication with teachers of the individual’s condition, affirming that absences and slight delay in submission of course work may be necessary.
- The school nurse should be made aware that the normal sitting down vital signs are not adequate for these patients; orthostatic vital signs must be taken, supine, sitting, and standing heart rate and blood pressure, as well as the objective and subjective signs and symptoms in each of these positions.
It is important to understand the disabling nature of this condition. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease.
(Information referenced from Thomas Ahern, MD, FACC; provided by Stacy Reed, RN, RRT-NPS November 2011.)
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Do you think this is beneficial?