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Rare Disease Day Video Project

I am seeking to help as many rare disease communities as possible share a message about how important rare disease research is to them. I am encouraging rare disease patients, family, and loved ones (even clinicians) to share a 30 to 60 second clip of what rare disease research means to them.

If you wish to record more information, you can also use the below “script” but it’s not necessary. It would be great if you would say, “Share rare awareness today. This message you share today may save a life. I dazzle for rare.

To record a message from your smart phone, tablet, or other computer, click the “record” button at the bottom of this page. You may be asked to allow access to your smart phone, tablet, or web cam – please select “yes.”

Record and watch the video back BEFORE submitting, please. If you submit a video on accident, please use the form at the very bottom of this page.

 

“Hi, my name is ____.”

 

 

“I am ____ years old.”

You do not have to include your age if you do not wish to do so.

 

“I was diagnosed with ___ ___ years/months/weeks ago.”

 

“When my symptoms first began, …”

Talk about the onset of your symptoms, events that may have triggered symptoms, or the moment you knew something was really wrong such as a trip to the ER, etc.

 

“On a daily basis, I experience …”

Talk about a typical day (if there is such a thing).

Also talk about the emotions you feel and the way other perceive you and how that affects you as well.

 

“This disease has affected my ability to …”

Talk about effects disease has had on your quality of life, family, and friends.

 

“The scariest thing/incident/symptom of this disease, for me, has been …”

Talk about an incident, symptom, or other that has been the hardest or frightened you the most.

 

After finishing the questions and answers, please ask the viewer to “share” this video to help raise awareness.

To record a video from this page, click “Rec” below.

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General Contact Form

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This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Video: Where Did I Put My Memory…

Posted by L.R. on on 1st September, 2014. This video talks about memory and “memory experts”.

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Video: Conversion Disorder 2

Woman displaying symptoms of conversion disorder. Jorge Marquet has a few of these videos of this woman on youtube.

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Video: The REAL definition of Psychogenic Non-Epileptic Seizures – PNES

Psychogenic Non-Epileptic Seizures (PNES) and Non Epileptic Attack Disorder has too much garbage results. PLEASE remember to doubt everything you read. Double and triple check before you believe anything stating it’s a fact. Trust your own body/mind and don’t accept anything as fact that doesn’t ring true to you. There’s a major flaw in all search engine algorithms – they filter to get valuable content… BUT it doesn’t mean it’s accurate at all. THAT IS HARMFUL THAN SPAM. There are so many definitions and categorizations of this brain disorder, and it became soooooo obvious why there is misconception. It’s fairly clear to me that the majority of what I’ve read has not written by anyone with PNES or with them in mind in any case – just lots of wrong labels and with complete neglect of the fact that we are living, breathing, and feeling human beings. It’s up to us to get the right message out there.

Christine Mauriello talks about PNES – psychogenic seizures. She shares her experiences on her youtube.com page.

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.