Information and Support for Patients
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Dysautonomia International has curated a list of resources and information including advocacy tips, crisis lines, scholarships, and ways to stay connected.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
Some of the different forms of dysautonomia include:
Postural Orthostatic Tachycardia Syndrome (POTS) - estimated to impact 1 out of 100 teenagers and, including adult patients, impacted an estimated 3 million Americans before COVID-19. Recent research shows that the number of POTS patients is now estimated to impact at least 6 million Americans since the pandemic began. POTS impacts millions of people around the world too, but we don't have good epidemiology data in other countries. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Neurocardiogenic Syncope (NCS) - NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.
Multiple System Atrophy (MSA) - MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson's disease, but unlike Parkinson's patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide.
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren's syndrome, lupus, and Parkinson's.1,3
There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease.4 There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life. 1, 2, 3, 4, 5
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
Some of the different forms of dysautonomia include:
Postural Orthostatic Tachycardia Syndrome (POTS) - estimated to impact 1 out of 100 teenagers and, including adult patients, impacted an estimated 3 million Americans before COVID-19. Recent research shows that the number of POTS patients is now estimated to impact at least 6 million Americans since the pandemic began. POTS impacts millions of people around the world too, but we don't have good epidemiology data in other countries. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Neurocardiogenic Syncope (NCS) - NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.
Multiple System Atrophy (MSA) - MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson's disease, but unlike Parkinson's patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide.
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren's syndrome, lupus, and Parkinson's.1,3
There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease.4 There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life. 1, 2, 3, 4, 5
Details
Resource type
Family Support, Websites and Applications
Disabilities
Autonomic Dysfunctions/Dysautonomia
Age
0-99
Eligibility
N/A
Location
Regions
Cariboo Chilcotin Coast, Fraser North, Fraser South, Fraser Valley, Greater Vancouver, Kootenays, North East, North West, Sunshine Coast / Squamish-Lillooet, Thompson Okanagan, Vancouver Island Central, Vancouver Island North, Vancouver Island South
Cities
108 Mile Ranch, 150 Mile House, 70 Mile House, Abbotsford, Agassiz, Ainsworth Hot Springs, Aldergrove, Alert Bay, Alexis Creek, Anahim Lake, Anglemont, Anmore, Apex Mountain Resort, Appledale, Armstrong, Arras, Arrow Creek, Ashcroft, Atlin , Avola, Balfour, Bamfield, Bankeir, Barkerville, Barriere, Baynes Lake, Bear Lake, Beaverdell, Belcarra, Bella Bella, Bella Coola, Big White Ski Resort, Black Creek, Blind Bay, Blue River, Boston Bar, Bowen Island, Bowser , Brentwood Bay, Bridal Falls, Bridge Lake, Britannia Beach, Buckhorn, Buick, Burnaby, Burns Lake, Burton, Cache Creek, Campbell River, Canal Flats, Canyon, Castlegar, Cawston, Celista, Charlie Lake, Chase, Chemainus, Cherryville, Chetwynd, Chilliwack, Christina Lake, Clearwater, Clinton, Coalmont, Cobble Hill, Coldstream, Colwood, Comox, Coquitlam, Courtenay, Cowichan Bay, Cranbrook, Crawford Bay, Crescent Valley, Creston, Crofton, Cultus Lake, Cumberland, D'Arcy, Davis Bay, Dawson Creek, Dease Lake, Delta, Denman Island, Dome Creek, Donald, Duncan, Eagle Bay, Eagle Creek, Earls Cove, Edgewater, Edgewood, Egmont, Elkford, Elko, Enderby, Erickson, Errington, Esquimalt, Fairmont Hot Springs, Falkland, Fanny Bay, Fauquier, Fernie, Fernie Alpine Resort, Field, Forest Grove, Fort Fraser, Fort Nelson, Fort St. James, Fort St. John, Fort Steele, Fraser Lake, Fruitvale, Gabriola Island, Galiano Island, Gambier Island, Garden Bay, Garibaldi Highlands, Genelle, Gibsons, Gillies Bay, Gingolx, Gold Bridge, Gold River, Golden, Grand Forks, Granisle, Grasmere, Greenwood, Grindrod, Halfmoon Bay, Harrison Hot Springs, Hazelton, Hedley, Heriot Bay, Hixon, Holberg, Honeymoon Bay, Hope, Hornby Island, Horsefly, Hosmer, Houston, Hudson’s Hope, Invermere, Iskut, Jaffray, Kaleden, Kamloops, Kaslo, Kelowna, Kemano , Keremeos, Kicking Horse Mountain Resort, Kimberley, Kimberley Alpine Resort, Kispiox, Kitimat, Kitwanga, Klemtu, Kootenay Bay, Kyuquot, Lac La Hache, Lac La Jeune, Ladner, Ladysmith, Lake Country, Lake Cowichan, Lake Errock, Langdale, Langford, Langley, Lantzville, Lasqueti Island, Likely, Lillooet, Lindell Beach, Lions Bay, Little Fort, Logan Lake, Lone Butte, Lumby, Lytton, Mackenzie, Madeira Park, Malakwa, Manning Park, Mansons Landing, Maple Ridge, Masset, Mayne Island, McBride, McLeod Lake, Meadow Creek, Merritt, Merville , Metchosin, Mica Creek, Mica Creek, Midway, Mill Bay , Mission, Moberly Lake, Monte Lake, Montrose, Moricetown, Mount Currie, Mount Washington Alpine Resort, Moyie Lake, Nakusp, Nanaimo, Nanoose Bay, Naramata, Nelson, New Aiyansh, New Denver, New Hazelton, New Westminster, Newton, Nimpo Lake , North Saanich, North Vancouver, Ocean Falls, Okanagan Falls, Olalla, Oliver, Osoyoos, Oyama, Panorama Mountain Village, Parksville, Peachland, Pemberton, Pender Harbour, Pender Island, Penticton, Pinantan Lake, Pitt Meadows, Port Alberni, Port Alice, Port Clements, Port Coquitlam, Port Edward, Port Hardy, Port McNeil, Port Moody, Port Renfrew, Pouce Coupe, Powell River, Prince George, Prince Rupert, Princeton, Pritchard, Procter, Puntzi Lake, Qualicum Beach, Quathiaski Cove, Queen Charlotte , Queens Bay, Quesnel, Radium Hot Springs , Red Mountain Resort, Revelstoke, Revelstoke Mountain Resort, Richmond, Roberts Creek, Rock Creek, Rolla , Rosedale, Rossland, Royston, Saanich, Saanichton, Salmo, Salmon Arm, Salt Spring Island, Saltery Bay, Sandspit, Saturna Island, Savona, Sayward, Scotch Creek, Sechelt, Seton Portage, Shalalth, Shawnigan Lake, Shearwater, Sicamous, Sidney, Silver Star Mountain Resort, Silverton , Skidegate, Skookumchuck, Slocan, Smithers, Sointula , Sooke, Sorrento, Sparwood, Spences Bridge, Squamish, Stewart, Summerland, Sun Peaks Resort, Sunset Prairie, Surrey, Swartz Bay, Tahsis, Tappen, Tatla Lake, Taylor, Telegraph Cove, Telegraph Creek, Telkwa, Terrace, Tete Jaune Cache, Texada Island, Thetis Island, Thompson Sound, Thornhill, Toad River, Tofino, Topley , Trail, Tsawwassen, Tulameen, Tumbler Ridge, Ucluelet, Union Bay, Valemount, Vancouver, Vanderhoof, Vavenby, Vernon, Victoria, View Royal, Wardner, Warfield, Wasa, Wells , West Kelowna, West Vancouver, Whaletown, Whistler, Whistler Blackcomb, White Rock, Whitewater Ski Resort, Williams Lake, Windermere, Winfield, Winlaw, Winter Harbour, Woss, Wynndel, Yale, Ymir, Zeballos
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