My wife has hEDS and POTS – (hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachicardic Syndrome). Her joints dislocate occasionally, and her skin bruises very easily. She can only stand and walk for short periods of time and uses a wheelchair every day. If she tries to stand for too long, she faints. (This happens about 4 times a day on average). Her entire autonomic system doesn’t function as it should.
hEDS is a connective tissue disorder which means her condition affects her entire body.
BRAIN – fatigue, brain fog, migraines, vertigo fainting, lightheadedness
MOUTH – most of her teeth have been replaced because they chip off, dry mouth, difficulty swallowing, she often chokes on saliva, food, and drinks
EYES – Dryness, light sensitivity, sluggish pupils, and greyed out vision. If her pupils don’t adapt to light and shrink she can’t see and of they don’t adapt to dark and widen she can’t see until they eventually adjust.
SKIN – Her condition is accompanied by fibromyalgia which is pins and needles like pains. She doesn’t sweat, and her skin tears and bruises easily while healing slowly and abnormally. This has lead to many surgical complications.
HEART – She has DAILY episodes of bradycardia, tachycardia, palpitations, and chest pains
BLOOD VESSELS – She experiences DAILY issues with blood circulation, poor blood perfusion, both high and low blood pressure during episodes. The lack of blood perfusion to the brain often leads to confusion, slurred, and/or lack of speech (her feet hurt and swelling due to blood pulling)
IMMUNE CELLS & MAST CELL ACTIVATION DISORDER – increased allergies, inflammation, hives, rashes, itching, flushing, swelling of face, GI issues, and brain fog. Her body will think it’s under attack and react accordingly.
BLADDER – frequent urination, urine retention, nocturna, bladder pain and swelling. This leads her to have frequent infections and urinating blood
STOMACH – Bloating, nausea, pain, stomach dumping, and vomiting
Intestines – impaired motility, diarrhea, extreme pain, intestinal cramping, and severe stretching and bloating of the intestines.
GALLBLADDER – reduced motility, inflammation, and pain.
JOINTS – hypermobile, dislocate easily, often hurt
In addition she can NOT be in the sun. The fainting becomes almost immediate. She experiences frequent shaking and tremors.
Due to hEDS being a connective tissue disorder there is no cure. On top of her disability, she loves to sing. Unfortunately, the connective tissue in her vocal chords limits the thing she loves to do the most.
All we can do is be supportive, accommodating, and try to help her be more comfortably mobile.
