EHLERS-DANLOS SYNDROME & DYSAUTONOMIA
EHLERS-DANLOS SYNDROME &
DYSAUTONOMIA
Presented By Lauren Stiles, JD President & Co-Founder
New York Institute of Technology December 8, 2017
HOW MANY PEOPLE WITH EDS
HAVE AUTONOMIC DYSFUNCTION?
Most studies are on hEDS
hEDS patients have more autonomic symptoms than other EDS types
49% of hEDS patients have POTS, 31% have OI, 20% have normal hemodynamics1
In hEDS, autonomic dysfunction is classified as:
mild (47%) moderate (33%) Severe (3.3%)2
1 Celletti, C., Camerota, F., Castori, M., et al., 2017. Orthostatic intolerance and postural orthostatic tachycardia syndrome in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type: Neurovegetative dysregulation or autonomic failure? BioMed Res Int., 9161865. 2 De Wandele, I., Rombaut, L., Leybaert, L., et al., 2014b. Dysautonomia and its underlying mechanisms in the hypermobility type of Ehlers-Danlos syndrome. Semin Arthritis Rheum. 44(1) 93-100.
Disease-Based
Dysautonomias
Syndromic (Possibly Disease Based?)
Central
Peripheral
Multiple System Atrophy
Parkinson's/ Lewy Body Dementias
Pure Autonomic
Failure
Small Fiber Neuropathies
Metabolic
Diabetes
Inflammatory
Immune
Genetic
Mitochondrial
POTS/OI
Complex Regional Pain
Syndrome
Reflex Syncope
Chronic Fatigue Syndrome
Interstitial Cystitis
Fibromyalgia
IBS/CIPO/ Gastroparesis
Chronic Migraine
Adapted from Chelimsky T, Robertson D, Chelimsky G. Disorders of the autonomic nervous system. In Daroff: Bradley's Neurology in Clinical Practice. 6th ed. Philadelphia, PA; Elsevier: chap 77.
POTS: DIAGNOSTIC CRITERIA
HR increase of 30bpm from supine to standing within 10 minutes (40bpm for ages 12-18)
In the absence of orthostatic hypotension (defined as 20/10mmHg drop within 3 min. of standing)
Symptoms of orthostatic intolerance lasting 6 months
Symptoms exacerbated by standing and improved with recumbency
Absence of other overt causes of orthostatic symptoms or tachycardia
POTS SYMPTOMS
Pronounced orthostatic
Sensitivity to heat/cold
tachycardia
Sensitivity to light/sounds
Palpitations
Migraines
Shortness of breath
Profound fatigue
Lightheadedness/pre-syncope Weakness
Syncope (20-30% with
Tremulousness
overlapping NCS)
Exercise intolerance
GI motility (33% too fast, 33% Dependent acrocyanosis
too slow) Nausea Bladder dysfunction (17%)
Flushing Increased allergies
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