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radiohfan23
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I've read there is perhaps a genetic correlation to dysautonomia. I myself am a 29 year old American Male (onset at 27 - slowly getting worse, no illness/lyme at onset) and of German/Irish descent (mostly Irish). I am curious as to the backgrounds of many of you out there to see whether there are any correlations. If you'd be kind enough to reply with your backgrounds along with any knowledge/theories on this I would appreciate it greatly.

I would set up a poll question but fear it would exclude many nationalities.

Take care everyone!

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Good question- I've wondered about this as well. I'm, a 48 y/o Caucasian American female. My ancestory is comprised of 50% Polish, 25% English, 25% Irish. We've got the Irish in common. Additionally, my son, 18 y/o, who is also a sufferer, has some German as well as the other nationalities listed above. Another similarity. Interesting to see how this pans out as more folks contribute.

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German and Irish here too!

Just to spoil the fun though, I think that this is more a sampling of the forum. There are a few published studies from the Middle East, South America and Japan using those populations. One thing that is of note, like many other diseases/conditions, orthostatic intolerance is far more prevalent among whites and more specifically women. If you look into aero-space research you'll see that Blacks have incredibly high tolerance for orthostatic stress, so you would be unlikely to find many POTS patients from that ethnic group. There are simply some diseases that hit certain races or genders harder than others and ours is poor orthostatic tolerance.

Another thing to note is that it could simply be misdiagnosed or underdiagnosed in other populations. Goodness knows that it is hard enough for us to have gotten a proper diagnosis to begin with, and the US/Europe/Australia are supposed to have the best healthcare in the world.

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Hi, I am half Caucasian (1/2 Scottish and 1/2 English) on my mother's side and half Chinese on my father's side.

I have tried to find out whether any of my Asian relatives have had anything like this and so far no one has.

I am positive this comes from my mother's side of the family as she also had some brief episodes of tachycardia in her 30s.

I would be interested in whether any other persons of Asian descent have this condition.

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Hi, I am half Caucasian (1/2 Scottish and 1/2 English) on my mother's side and half Chinese on my father's side.

I have tried to find out whether any of my Asian relatives have had anything like this and so far no one has.

I am positive this comes from my mother's side of the family as she also had some brief episodes of tachycardia in her 30s.

I would be interested in whether any other persons of Asian descent have this condition.

This is simply the latest article from an Asian source:

Am J Cardiol. 2010 Aug 1;106(3):378-82.

Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome.

Liao Y, Chen S, Liu X, Zhang Q, Ai Y, Wang Y, Jin H, Tang C, Du J.

Department of Pediatrics, Peking University First Hospital, Beijing, People's Republic of China.

Abstract

The study was designed to explore flow-mediated vasodilation (FMD) and endothelium function in children with postural orthostatic tachycardia syndrome (POTS). The patient group consisted of 46 children 12 +/- 3 years of age who were diagnosed with POTS from June 2008 to January 2009 by head-up test or head-up tilt test at Peking University First Hospital. Twenty healthy children 12 +/- 4 years of age were selected for the control group. Plasma concentrations of nitric oxide (NO) and activity of NO synthase (NOS) were determined in the patient and control groups. FMD of each participant's brachial artery was measured using color Doppler vascular ultrasound and a comparison of FMDs and plasma NO and NOS activities between the 2 groups was done using independent t test. No significant differences were found between the POTS and control groups in age, sex ratio, height, body weight, baseline blood pressure, heart rate, and baseline brachial artery diameter. Patients in the POTS group had larger FMD (10.8 +/- 4.4%) than children in the control group (5.7 +/- 2.2%), and this difference was significant (p <0.01). Plasma NO and NOS levels were significantly higher in the POTS group than in the control group (NO 74 +/- 19 micromol/L in POTS group vs 62 +/- 6 micromol/L in control group, p <0.01; NOS 21 +/- 3 U/mL in POTS group vs 15 +/- 1 U/mL in control group, p <0.01). In addition, there was a significant correlation between FMD and the NOS activity. In conclusion, augmented FMD and abnormal function of vascular endothelium may play an important role in POTS in children.

Copyright © 2010 Elsevier Inc. All rights reserved.

PMID: 20643249 [PubMed - indexed for MEDLINE]

and one from Japan:

Pediatr Int. 2009 Feb;51(1):169-79.

Japanese clinical guidelines for juvenile orthostatic dysregulation version 1.

Tanaka H, Fujita Y, Takenaka Y, Kajiwara S, Masutani S, Ishizaki Y, Matsushima R, Shiokawa H, Shiota M, Ishitani N, Kajiura M, Honda K; Task Force of Clinical Guidelines for Child Orthostatic Dysregulation, Japanese Society of Psychosomatic Pediatrics.

Department of Pediatrics, Osaka Medical College, Takatsuki, Osaka, Japan. hidetaka@poh.osaka-med.ac.jp

Abstract

This clinical practice guideline provides recommendations for the assessment, diagnosis and treatment of school-aged children and juveniles with orthostatic dysregulation (OD), usually named orthostatic intolerance in USA and Europe. This guideline is intended for use by primary care clinicians working in primary care settings. The guideline contains the following recommendations for diagnosis of OD: (i) initial evaluation composed of including and excluding criteria, the assessment of no evidence of other disease including cardiac disease and so on; (ii) a new orthostatic test to determine four different subsets: instantaneous orthostatic hypotension, postural tachycardia syndrome, neurally mediated syncope and delayed orthostatic hypotension; (iii) evaluation of severity; and (iv) judgment of psychosocial background with the use of rating scales. The guideline also contains the following recommendations for treatment of OD on the basis of the result of an orthostatic test in addition to psychosocial assessment: (i) guidance and education for parents and children; (ii) non-pharmacological treatments; (iii) contact with school personnel; (iv) use of adrenoceptor stimulants and other medications; (v) strategies of psychosocial intervention; and (vi) psychotherapy. This clinical practice guideline is not intended as a sole source of guidance in the evaluation of children with OD. Rather, it is designed to assist primary care clinicians by providing a framework for decision making of diagnosis and treatments.

PMID: 19371306

Edited by firewatcher
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German, French and English.

I did see an allergist last spring who said there seems to be a higher tendency amongst germanic backgrounds for people to have mast cell issues- which seem to be related to dysautonomia for a lot of us.

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German and Irish here too!

Just to spoil the fun though, I think that this is more a sampling of the forum. There are a few published studies from the Middle East, South America and Japan using those populations. One thing that is of note, like many other diseases/conditions, orthostatic intolerance is far more prevalent among whites and more specifically women. If you look into aero-space research you'll see that Blacks have incredibly high tolerance for orthostatic stress, so you would be unlikely to find many POTS patients from that ethnic group. There are simply some diseases that hit certain races or genders harder than others and ours is poor orthostatic tolerance.

Another thing to note is that it could simply be misdiagnosed or underdiagnosed in other populations. Goodness knows that it is hard enough for us to have gotten a proper diagnosis to begin with, and the US/Europe/Australia are supposed to have the best healthcare in the world.

Thanks for the information firewatcher! Really good stuff. It is interesting that it's almost exclusively a caucasion issue, but as you said it's not uncommon for different races to be affected by different types of conditions. And I am also in agreement that it's certainly vastly under or missdiagnosed.

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35 year old Caucasian woman (1/2 Polish, 1/4 English, and 1/4 Scottish).

This is off topic, but I have read studies that suggest extremely fit individuals tend to have lower orthostatic tolerance. I have always been very fit and athletic, and it seems many of my new POTS friends were the same when POTS hit. I wonder if this is a predisposing factor, as well as race and gender.

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I've come across studies from the US, Greece, Spain, Poland, Russia, China, Japan, Israel, India, Brazil and Australia. Not all countries will call this POTS, in Asia it is Orthostatic Dysregulation. I think that those diagnosed with POTS are primarily the US, UK and Australia, but if you search the term orthostatic it brings up many more hits from all over the globe. The one group that seems "immune" is anyone of purely African ethnicity and then there are studies of how strong their tolerance to orthostatic challenge actually is compared to everyone else. I think that the prevalence of European ancestry is simply a reflection of the participants of this forum.

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35 year old Caucasian woman (1/2 Polish, 1/4 English, and 1/4 Scottish).

This is off topic, but I have read studies that suggest extremely fit individuals tend to have lower orthostatic tolerance. I have always been very fit and athletic, and it seems many of my new POTS friends were the same when POTS hit. I wonder if this is a predisposing factor, as well as race and gender.

Interesting point on the fitness. I myself was an athlete my entire life and ran track through college. I was in the process of training for a half marathon when symptoms set in and I was no longer able to run. I wonder if there is a predisposition inherent to us that provoked the onset as a result of riggorous exercise. At first when symptoms set in I felt as if I was just overworking my body and needed rest, but I never recovered and eventually got much worse.

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Firewatcher, Very interesting indeed... Good point!

Radiofan,

My story is similar to yours. I was an athlete all my life. My troubles started the 3rd Saturday in May 2008, as I was exiting the swimming pool after a rigorous work-out. I thought you may find this article and some of the articles referenced interesting. At first, I stopped my exercise and became bedridden. I am doing much better after restarting my exercise program and am back to a high level of fitness, though I still am debilitated with POTS. I believe I was pre-disposed to POTS based on my fitness level at the time and probably being a pre-menopausal, Caucasian female.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2343225/

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Primarily Irish, Scottish and English with a bit of Scandinavian thrown in. Basically, one of the folks who can never have a tan! B)

I am fairly certain it goes through my mother's line (heavier on the Irish) because my cousin was just diagnosed. And my grandmother and mother both have had some 'strange spells' and other things they like to ignore.

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Female, 1/2 German/Swiss and 1/2 French. Another question to think about: Anyone here adopted? My adoptive family is from Germany, but I have met my biological mother and know my nationality where others might not....

Interesting question, though. I was also very fit when I got ill, but I also became sick 3 months after moving to AZ, where they have a nasty virus that comes from the soil called "Valley Fever". They think that may have been the onset of my dysautonomia. (Perhaps I should move back to Iowa? Brrr....)

Cheers,

Jana

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