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I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. HEALTHY HIGH SALT DIET TIPS Healthy High Salt Diet Tips Many people living with POTS and other forms of dysautonomia are advised by their doctors to consume a high salt diet to help manage their symptoms. POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME SUMMARY Downloaded from www.dysautonomiainternational.org Postural Orthostatic Tachycardia Syndrome Summary Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. Since MSA can cause widespread nerve damage, it may cause diverse symptoms throughout the body. DYSAUTONOMIA INTERNATIONAL: Cognitive impairment describes problems thinking while upright, mental confusion and decreased working memory collectively called "brain fog" by patients. Some people also have symptoms such as dizziness, headache, brain fog, fatigue, nausea, and palpitations when they are kept upright. This is called "orthostatic intolerance." INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O) DYSAUTONOMIA INTERNATIONAL: MEDICAL JOURNAL ARTICLES ON POTS The following list contains a selection of peer reviewed medical journal articles pertaining to Postural Orthostatic Tachycardia Syndrome (POTS). There are many more medical journal articles written about POTS, other than those contained on this list. You can also do your own medical literature search on PubMed.gov, a free service offered by the United States National Institutes of Health. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in ON BEING A MYSTERY PATIENT On Being A Mystery Patient – A Nurse’s Experience with POTS. I can recall vividly every odd sensation, “episode,” and doctor visit from my journey to being diagnosed with POTS ( postural orthostatic tachycardia syndrome ). Prior to being accurately diagnosed, I completed over a dozen diagnostic tests – including event monitors,Holter
I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. HEALTHY HIGH SALT DIET TIPS Healthy High Salt Diet Tips Many people living with POTS and other forms of dysautonomia are advised by their doctors to consume a high salt diet to help manage their symptoms. POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME SUMMARY Downloaded from www.dysautonomiainternational.org Postural Orthostatic Tachycardia Syndrome Summary Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. DYSAUTONOMIA INTERNATIONAL: What is dysautonomia? 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 DYSAUTONOMIA INTERNATIONAL: Dysautonomia can be a very difficult illness to cope with. We understand how hard it is because we are patients too. It is not uncommon for people with dysautonomia and many other chronic health conditions to go through periods of depression, anxiety or other emotional health challenges. This is nothing to be ashamed of, but you should seek professional help if you are having trouble coping. DYSAUTONOMIA INTERNATIONAL: Educational Materials Dysautonomia International has prepared the following educational materials which you can print out and use to help raise awareness. Dysautonomia In General What Is Dysautonomia? - two page flyer What is Dysautonomia? Newly Diagnosed Patient Brochure Diagram of the Autonomic Nervous System - If reproducing this image, please including the following credit to Dr. DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in DYSAUTONOMIA INTERNATIONAL: INTERACTIVE MAP Doctor Dr. Dennis Hart USA Joe DiMaggio Children's Hospital 4651 Sheridan Street Suite 150 Hollywood, FL 33021 Hollywood FL USA Phone:954-276-1600
DYSAUTONOMIA INTERNATIONAL: INTERACTIVE MAP Doctor Dr. Christina Kokorelis USA Kennedy Krieger Institute 801 N. Broadway 4th Floor Baltimore, MD 21205 Baltimore MD USA Phone:443-923-9400
QUICK MEAL IDEAS FOR LOW SPOON DAYS I top it off with some hot sauce, barbeque sauce, Mexican spice blends, lemon juice, or oil and vinegar. Add whatever veggies or fruit you have on hand (berries, apple, avocado, onion, tomato, peppers, shredded carrots) and you’ve got yourself a nutritious, filling meal. Iceberg or butter lettuce with feta, kalmata olives, some oliveoil
DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA Familial Dysautonomia (FD) is an exceptionally rare genetic disorder seen almost entirely in persons of Ashkenazi Jewish descent. There are only about 350 people worldwide living with this disease. FD is very serious and is considered fatal, although with better treatments, patients are living longer than they did in DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in DYSAUTONOMIA INTERNATIONAL: Cognitive impairment describes problems thinking while upright, mental confusion and decreased working memory collectively called "brain fog" by patients. Some people also have symptoms such as dizziness, headache, brain fog, fatigue, nausea, and palpitations when they are kept upright. This is called "orthostatic intolerance." DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. Since MSA can cause widespread nerve damage, it may cause diverse symptoms throughout the body. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O) 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA Familial Dysautonomia (FD) is an exceptionally rare genetic disorder seen almost entirely in persons of Ashkenazi Jewish descent. There are only about 350 people worldwide living with this disease. FD is very serious and is considered fatal, although with better treatments, patients are living longer than they did in DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in DYSAUTONOMIA INTERNATIONAL: Cognitive impairment describes problems thinking while upright, mental confusion and decreased working memory collectively called "brain fog" by patients. Some people also have symptoms such as dizziness, headache, brain fog, fatigue, nausea, and palpitations when they are kept upright. This is called "orthostatic intolerance." DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. Since MSA can cause widespread nerve damage, it may cause diverse symptoms throughout the body. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O) 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. DYSAUTONOMIA INTERNATIONAL: EXERCISES FOR DYSAUTONOMIA Helpful exercises may include: Leg Pillow Squeeze - while laying down or reclined in bed, put a pillow folded between your knees and squeeze. Hold it for 10 seconds. Repeat. Arm Pillow Squeeze - put the pillow folded between your palms and squeeze together DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA There are many other forms of dysautonomia. Some are quite rare, such as Familial Dysautonomia, while others are fairly common, such as Diabetic Autonomic Neuropathy. The following links lead to additional information on some of the other known autonomic conditions. This is not an all-inclusive list. Information from Dysautonomia International: Neurocardiogenic Syncope/Vasovagal Syncope DYSAUTONOMIA INTERNATIONAL: How to Find a Doctor With Experience in Autonomic Disorders You can use the regional listing below, or the Interactive Global Dysautonomia Map to find a physician. Please note that this is not a comprehensive list of all doctors capable of treating patients with autonomic disorders, and some of the doctors on this list may be better qualified than others to treat certain conditions. DYSAUTONOMIA INTERNATIONAL: CONFERENCE DATES October 15-18, 2020 CONFERENCE LOCATION Due to COVID-19, this year's conference will be broadcast live online through Zoom. Over 4,000 guests are expected. CONFERENCE REGISTRATION We are very excited to announce that registration for the 2020 Virtual Conference is FREE! We welcome donations to help support Dysautonomia International's research, education and DYSAUTONOMIA INTERNATIONAL: 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 ofthe
DYSAUTONOMIA INTERNATIONAL: 10 FACTS DOCTORS SHOULD KNOW 1. POTS is a disorder of the autonomic nervous system. Approximately 50% of POTS patients have sudomotor neuropathy, and 20% have cardiac dropout on MIBG scans, which may be due to cardiac autonomic neuropathy.(1-4) 2. POTS is not rare. POTS impacts an estimated 1,000,000 to 3,000,000 Americans;(5-10, 30) 80-85% female, most commonly women of childbearing age.(7,8,11,12) POTS DYSAUTONOMIA INTERNATIONAL: Dysautonomia International has created an Autonomic Disorders Video Library that contains educational lectures on autonomic disorders from some of the world's best autonomic experts. Some of our favorites are below, but check out the Library for additional videos. Please do not redistribute or use content from the videos or accompanying slides with out permission from Dysautonomia International. DYSAUTONOMIA INTERNATIONAL: FIND A SUPPORT GROUP POTS is the largest Facebook group for POTS patients and caregivers with over 20,000 members from around the world. It was founded by Dysautonomia International Board Member Jodi Epstein Rhum. POTSibilities Parents provides a place for parents of children with dysautonomia to connect. Dysautonomia International Teens provides acommunity for
DYSAUTONOMIA INTERNATIONAL: INAPPROPRIATE SINUS Inappropriate sinus tachycardia (IST), a form of dysautonomia that is estimated to impact around 1.2% of the population.(1) IST is characterized by unexpectedly fast heart rates at rest, with minimal physical activity, or both.(2) Definition The syndrome of IST is defined as a sinus heart rate over 100 beats per minute (bpm) at rest, with a mean 24-hour heart rate of over 90 bpm not due to PLEASE PASS THE SALT… PLEASE PASS THE SALT. Many doctors recommend increasing salt intake to help combat the symptoms of lightheadeness, low blood pressure, fatigue and brain fog that is often seen in dysautonomia patients. Dysautonomia patients often buy salt pills, or expensive supplements and electrolyte drinks to get their salt, but there are easier, more DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA Familial Dysautonomia (FD) is an exceptionally rare genetic disorder seen almost entirely in persons of Ashkenazi Jewish descent. There are only about 350 people worldwide living with this disease. FD is very serious and is considered fatal, although with better treatments, patients are living longer than they did in DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in DYSAUTONOMIA INTERNATIONAL: Cognitive impairment describes problems thinking while upright, mental confusion and decreased working memory collectively called "brain fog" by patients. Some people also have symptoms such as dizziness, headache, brain fog, fatigue, nausea, and palpitations when they are kept upright. This is called "orthostatic intolerance." DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. Since MSA can cause widespread nerve damage, it may cause diverse symptoms throughout the body. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O) 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA Familial Dysautonomia (FD) is an exceptionally rare genetic disorder seen almost entirely in persons of Ashkenazi Jewish descent. There are only about 350 people worldwide living with this disease. FD is very serious and is considered fatal, although with better treatments, patients are living longer than they did in DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. A TALE OF TWO SYNDROMES Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing, chest tightness, wheezing, lightheadedness (usually a combination of some of these symptoms is present) Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others) Improvement in DYSAUTONOMIA INTERNATIONAL: Cognitive impairment describes problems thinking while upright, mental confusion and decreased working memory collectively called "brain fog" by patients. Some people also have symptoms such as dizziness, headache, brain fog, fatigue, nausea, and palpitations when they are kept upright. This is called "orthostatic intolerance." DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. Since MSA can cause widespread nerve damage, it may cause diverse symptoms throughout the body. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O) 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. DYSAUTONOMIA INTERNATIONAL: EXERCISES FOR DYSAUTONOMIA Helpful exercises may include: Leg Pillow Squeeze - while laying down or reclined in bed, put a pillow folded between your knees and squeeze. Hold it for 10 seconds. Repeat. Arm Pillow Squeeze - put the pillow folded between your palms and squeeze together DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA There are many other forms of dysautonomia. Some are quite rare, such as Familial Dysautonomia, while others are fairly common, such as Diabetic Autonomic Neuropathy. The following links lead to additional information on some of the other known autonomic conditions. This is not an all-inclusive list. Information from Dysautonomia International: Neurocardiogenic Syncope/Vasovagal Syncope DYSAUTONOMIA INTERNATIONAL: How to Find a Doctor With Experience in Autonomic Disorders You can use the regional listing below, or the Interactive Global Dysautonomia Map to find a physician. Please note that this is not a comprehensive list of all doctors capable of treating patients with autonomic disorders, and some of the doctors on this list may be better qualified than others to treat certain conditions. DYSAUTONOMIA INTERNATIONAL: CONFERENCE DATES October 15-18, 2020 CONFERENCE LOCATION Due to COVID-19, this year's conference will be broadcast live online through Zoom. Over 4,000 guests are expected. CONFERENCE REGISTRATION We are very excited to announce that registration for the 2020 Virtual Conference is FREE! We welcome donations to help support Dysautonomia International's research, education and DYSAUTONOMIA INTERNATIONAL: 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 ofthe
DYSAUTONOMIA INTERNATIONAL: 10 FACTS DOCTORS SHOULD KNOW 1. POTS is a disorder of the autonomic nervous system. Approximately 50% of POTS patients have sudomotor neuropathy, and 20% have cardiac dropout on MIBG scans, which may be due to cardiac autonomic neuropathy.(1-4) 2. POTS is not rare. POTS impacts an estimated 1,000,000 to 3,000,000 Americans;(5-10, 30) 80-85% female, most commonly women of childbearing age.(7,8,11,12) POTS DYSAUTONOMIA INTERNATIONAL: Dysautonomia International has created an Autonomic Disorders Video Library that contains educational lectures on autonomic disorders from some of the world's best autonomic experts. Some of our favorites are below, but check out the Library for additional videos. Please do not redistribute or use content from the videos or accompanying slides with out permission from Dysautonomia International. DYSAUTONOMIA INTERNATIONAL: FIND A SUPPORT GROUP POTS is the largest Facebook group for POTS patients and caregivers with over 20,000 members from around the world. It was founded by Dysautonomia International Board Member Jodi Epstein Rhum. POTSibilities Parents provides a place for parents of children with dysautonomia to connect. Dysautonomia International Teens provides acommunity for
DYSAUTONOMIA INTERNATIONAL: INAPPROPRIATE SINUS Inappropriate sinus tachycardia (IST), a form of dysautonomia that is estimated to impact around 1.2% of the population.(1) IST is characterized by unexpectedly fast heart rates at rest, with minimal physical activity, or both.(2) Definition The syndrome of IST is defined as a sinus heart rate over 100 beats per minute (bpm) at rest, with a mean 24-hour heart rate of over 90 bpm not due to PLEASE PASS THE SALT… PLEASE PASS THE SALT. Many doctors recommend increasing salt intake to help combat the symptoms of lightheadeness, low blood pressure, fatigue and brain fog that is often seen in dysautonomia patients. Dysautonomia patients often buy salt pills, or expensive supplements and electrolyte drinks to get their salt, but there are easier, more DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA There are many other forms of dysautonomia. Some are quite rare, such as Familial Dysautonomia, while others are fairly common, such as Diabetic Autonomic Neuropathy. The following links lead to additional information on some of the other known autonomic conditions. This is not an all-inclusive list. Information from Dysautonomia International: Neurocardiogenic Syncope/Vasovagal Syncope DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments A TALE OF TWO SYNDROMES by Dr. Andrew White. There seems to be a growing awareness in the medical and patient community that some patients with postural orthostatic tachycardia syndrome (POTS) also have mast cell activationsyndrome (MCAS).
DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. DYSAUTONOMIA INTERNATIONAL: NOW ENROLLING: Cardiovagal baroreflex, neurovascular coupling and cognition in POTS Dr. Julian Stewart at New York Medical College is seeking female participants ages 15-30 who have Postural Tachycardia Syndrome (POTS) to participate in a New York Medical College IRB-approved research protocol that is funded by the National Institutes of Health. INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O)I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
DYSAUTONOMIA INTERNATIONAL: DYSAUTONOMIA AWARENESSRESEARCHCONNECTGET INVOLVEDDONATE/SHOPEVENTSPRESS ROOM Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA There are many other forms of dysautonomia. Some are quite rare, such as Familial Dysautonomia, while others are fairly common, such as Diabetic Autonomic Neuropathy. The following links lead to additional information on some of the other known autonomic conditions. This is not an all-inclusive list. Information from Dysautonomia International: Neurocardiogenic Syncope/Vasovagal Syncope DYSAUTONOMIA INTERNATIONAL: AUTOIMMUNE AUTONOMIC Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. DYSAUTONOMIA INTERNATIONAL: LIFESTYLE ADAPTATIONS FOR POTS There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments A TALE OF TWO SYNDROMES by Dr. Andrew White. There seems to be a growing awareness in the medical and patient community that some patients with postural orthostatic tachycardia syndrome (POTS) also have mast cell activationsyndrome (MCAS).
DYSAUTONOMIA INTERNATIONAL: MULTIPLE SYSTEM ATROPHY (MSA) Multiple System Atrophy (MSA, also known a Shy-Drager Syndrome) is a rare neurological condition that causes Parkinson's like symptoms, however MSA patients have more widespread autonomic nerve damage than typical a Parkinson's patient. DYSAUTONOMIA INTERNATIONAL: NOW ENROLLING: Cardiovagal baroreflex, neurovascular coupling and cognition in POTS Dr. Julian Stewart at New York Medical College is seeking female participants ages 15-30 who have Postural Tachycardia Syndrome (POTS) to participate in a New York Medical College IRB-approved research protocol that is funded by the National Institutes of Health. INSTRUCTIONS FOR POTS EXERCISE PROGRAM—CHILDREN’S HOSPITAL SIDE PLANK HOLD -Perform 3 repetitions on each side, holding for 15-30 seconds each time - Begin lying on your side in a long line. Feet can be stacked on top of each other or one in front of the other. - Then line up elbow under shoulder and lift your body off of the surface to make one long line (Picture O)I AM A POTSIE GIRL!
Dysautonomia is a big word. You can say it like this: Dis-auto-no-me-a. It means all of the things that your body does automatically does not function correctly. 10 FACTS ABOUT POTS: POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME 10 Facts About POTS: Postural Orthostatic Tachycardia Syndrome There are an estimated 1-3 million Americans living with POTS, making POTSmore common than
DYSAUTONOMIA INTERNATIONAL: OTHER FORMS OF DYSAUTONOMIA There are many other forms of dysautonomia. Some are quite rare, such as Familial Dysautonomia, while others are fairly common, such as Diabetic Autonomic Neuropathy. The following links lead to additional information on some of the other known autonomic conditions. This is not an all-inclusive list. Information from Dysautonomia International: Neurocardiogenic Syncope/Vasovagal Syncope DYSAUTONOMIA INTERNATIONAL: How to Find a Doctor With Experience in Autonomic Disorders You can use the regional listing below, or the Interactive Global Dysautonomia Map to find a physician. Please note that this is not a comprehensive list of all doctors capable of treating patients with autonomic disorders, and some of the doctors on this list may be better qualified than others to treat certain conditions. DYSAUTONOMIA INTERNATIONAL: EXERCISES FOR DYSAUTONOMIA Now available for download Think of exercise as an important part of your treatment plan if you have an autonomic disorder. It can be just as important as medications your doctor may have prescribed, and the good news is that exercise is free and can be done at your own pace. Before you begin an exercise regimen to help manage your symptoms, you should check with your doctor and get cleared DYSAUTONOMIA INTERNATIONAL: CONFERENCE DATES October 15-18, 2020 CONFERENCE LOCATION Due to COVID-19, this year's conference will be broadcast live online through Zoom. Over 4,000 guests are expected. CONFERENCE REGISTRATION We are very excited to announce that registration for the 2020 Virtual Conference is FREE! We welcome donations to help support Dysautonomia International's research, education and DYSAUTONOMIA INTERNATIONAL: What is dysautonomia? 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 DYSAUTONOMIA INTERNATIONAL: 10 FACTS DOCTORS SHOULD KNOW 1. POTS is a disorder of the autonomic nervous system. Approximately 50% of POTS patients have sudomotor neuropathy, and 20% have cardiac dropout on MIBG scans, which may be due to cardiac autonomic neuropathy.(1-4) 2. POTS is not rare. POTS impacts an estimated 1,000,000 to 3,000,000 Americans;(5-10, 30) 80-85% female, most commonly women of childbearing age.(7,8,11,12) POTS DYSAUTONOMIA INTERNATIONAL: Dysautonomia International has created an Autonomic Disorders Video Library that contains educational lectures on autonomic disorders from some of the world's best autonomic experts. Some of our favorites are below, but check out the Library for additional videos. Please do not redistribute or use content from the videos or accompanying slides with out permission from Dysautonomia International. DYSAUTONOMIA INTERNATIONAL: FIND A SUPPORT GROUP We know how valuable it can be for patients and caregivers to connect with others in their own community who are facing similar challenges. That is why we have compiled the following list of volunteer-led local dysautonomia support groups. Please note that Dysautonomia International cannot verify the accuracy of information posted on thegroups.
DYSAUTONOMIA INTERNATIONAL: INAPPROPRIATE SINUS Inappropriate sinus tachycardia (IST), a form of dysautonomia that is estimated to impact around 1.2% of the population.(1) IST is characterized by unexpectedly fast heart rates at rest, with minimal physical activity, or both.(2) Definition The syndrome of IST is defined as a sinus heart rate over 100 beats per minute (bpm) at rest, with a mean 24-hour heart rate of over 90 bpm not due to PLEASE PASS THE SALT… Here are some salty items you can find in popular American restaurants. Please note that many of these restaurant items contain obscene amounts of calories and fat, with the exception of the Hot & Sour Soup, which is surprisingly low calorie compared to other itemson the list.
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