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Postural Orthostatic Tachycardia Syndrome

What is Postural Orthostatic Tachycardia Syndrome?

Postural Orthostatic Tachycardia Syndrome is a complex disorder in which a change in position to an upright causes an abnormally large increase in heart rate and a severe drop in blood pressure.

 

Postural Orthostatic Tachycardia Syndrome is a complex disorder in which a change in position to an upright causes an abnormally large increase in heart rate and a severe drop in blood pressure.
Acknowledgement of Postural Orthostatic Tachycardia Syndrome has not been added yet.
Prevalence Information of Postural Orthostatic Tachycardia Syndrome has not been added yet.
Synonyms for Postural Orthostatic Tachycardia Syndrome has not been added yet.
It is thought to be the result of a genetic mutation in the collagen, that causes all the soft tissue of the body to be weaker and more elastic than in healthy individuals.
Orthostatic Intolerance, tachycardia, migraines, weakness, nausea, visual disturbances, blackouts, shortness of breath, hypersensitivity to sensory stimulation, brain fog, appetite disturbance, vertigo, lightheadedness, temperature regulation problems
Diagnosis of Postural Orthostatic Tachycardia Syndrome has not been added yet.
Diagnostic tests of Postural Orthostatic Tachycardia Syndrome has not been added yet
pain killers, increased salt and water intake, exercise, lifestyle modification
good with appropriate lifestyle modification.
Tips or Suggestions of Postural Orthostatic Tachycardia Syndrome has not been added yet.
References of Postural Orthostatic Tachycardia Syndrome has not been added yet.
Intro Created by ToniR
Last updated 5 Feb 2013, 06:45 PM

Posted by ToniR
5 Feb 2013, 06:45 PM

My daughter was recently diagnosed with this issue. She seems to have more bad days than good; it's been going on for two years so far with no end in sight. We're trying to learn all we can to help her have as much normalcy as possible.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Intro

Created by ToniR | Last updated 5 Feb 2013, 06:45 PM


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