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Episodic Ataxia, Type 2

What is Episodic Ataxia, Type 2?

Episodic Ataxia, Type 2 is a rare genetic disorder characterized by sporadic episodes of severe discoordination caused by mutations in CACNA1A.

 

Episodic Ataxia, Type 2 is a rare genetic disorder characterized by sporadic episodes of severe discoordination caused by mutations in CACNA1A.
Acknowledgement of Episodic Ataxia, Type 2 has not been added yet.
Prevalence Information of Episodic Ataxia, Type 2 has not been added yet.
Synonyms for Episodic Ataxia, Type 2 has not been added yet.
Cause of Episodic Ataxia, Type 2 has not been added yet.
Symptoms for Episodic Ataxia, Type 2 has not been added yet.
Diagnosis of Episodic Ataxia, Type 2 has not been added yet.
Diagnostic tests of Episodic Ataxia, Type 2 has not been added yet
Treatments of Episodic Ataxia, Type 2 has not been added yet.
Prognosis of Episodic Ataxia, Type 2 has not been added yet.
Tips or Suggestions of Episodic Ataxia, Type 2 has not been added yet.
References of Episodic Ataxia, Type 2 has not been added yet.
Worst episode ever Created by SusanLM4
Last updated 10 Apr 2018, 01:50 PM

Posted by SusanLM4
10 Apr 2018, 01:50 PM

I am experiencing one of the worst episodes ever in my life. It started quite innocently and without the usual triggers. My eyes rolled to the upper left in my head while my entire body felt a wave of dizziness so bad that I thought I would faint. Luckily, I was already lying in bed or I might have fainted. After that, the dizziness was so intense that I could hardly move a muscle without ripples of painful dizziness rolling through my body. That was four days ago and I am still feeling the effects. I am still getting waves of dizziness when I move and feelings of nausea when I try to eat. 

I am so tired of being sick! All I want to do is get up and get on with my life. This is such an exasperating disorder and steals so much of my life away. It’s so difficult to explain to people that I can’t go anywhere or do anything because I can’t walk or see straight. People are sympathetic for a while but then they start to wonder if you are just faking to get out of doing things. Sometimes, I just want this whole thing to be over with...

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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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Diagnosed with Ataxia in Fall 2011. Have had head injuries in youth playing sports, furthered in adulthood with nearby lightening strike, falling from a 4-story scaffolding that collapsed, auto...
I am a 41 year old female with chronic dizziness that has most recently been diagnosed as episodic ataxia, however, I do not have the traditional issues associated with this disorder such as...

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Worst episode ever

Created by SusanLM4 | Last updated 10 Apr 2018, 01:50 PM


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