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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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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: RHR: Low Dose Naltrexone (LDN) as a Treatment for Autoimmune Disease

An excellent and informative video on LDN therapy in autoimmune diseases.



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.

Link: LDN Research Trust

The primary aim of the Trust is to initiate Clinical Trials of Low Dose Naltrexone, help and support those who have a condition where LDN could be of benefit obtain a prescription around the world.

LDN (low dose naltrexone) therapy can be beneficial in many autoimmune conditions including Hashimoto’s Thyroiditis. For more information about this therapy and information you can share with your Primary Care Physician or General Practitioner, please visit http://www.ldnresearchtrust.org/.

You can also find a link to their info sheet on LDN therapy at http://www.ldnresearchtrust.org/sites/default/files/2016.pdf.

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.

Link: Private Medical Services by UK Doctors

While we do not advocate using online pharmacies that are not montiored by reputable GPs, some patients may find this link informative and help form an understanding of what autoimmune conditions LDN (low dose naltrexone) may help treat. Please always review your current medications with your GP before starting LDN therapy.

 

https://www.prescribe4me.co.uk/questionnaires/ldn.aspx

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.

Link: Stanford University Video Library

Stanford University offers many education videos about epilepsy on their website, http://neurology.stanford.edu.

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.

Tuesday June 23rd, 2015

The website has been down several days. I have noticed a huge influx of “D.O.S” attacks to the site and therefore took it down and blocked access to files. This seems to have been effective in the last 24 hours to prevent further attacks. There have also been some hacking attempts. Several of the video file pages were hit in a suspicious manner as well around this time.

I plan to continue to plumb the internet for useful studies, articles, videos, and content that is relevant to patients with Hashimoto’s Encephalopathy, Autoimmune Encephalopathy, as well as many conditions that can be seen as comorbid or occur along with autoimmunity. I hope this broad spectrum of information is helpful to folks, not only with HE/AE but with other autoimmune conditions as well as other conditions across the realm of modern medicine. As far other portions of the site, those may change. Please “watch this space”.

Thank you to everyone who visits the site. We hope you find it useful in your journey to understanding and making more informed health care choices with the input of your clinician and/or medical team.

Just a reminder, nothing on this website is offered as advice in place of your own clinician’s training and expertise. Please keep that in mind not only while viewing the contents linked to from this site but also other sites who are not monitored by physicians and especially by those who are not familiar with your particular medical case.

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.

Link: posterior dominant rhythm

clinical significance

The presence of a normal reactive posterior dominant rhythm is indicative of a well-functioning brain and automatically rules out all sorts of pathology. In a patient with altered mental status where the differential includes seizures, encephalopathy, or something psychogenic, the presence of a normal reactive PDR is a very strong argument against the first two.

A wealth of EEG information can be found, in addition to the above at http://eegatlas-online.com/index.php/alphabetical-index/posterior-dominant-rhythm-guest.

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.

Link: Positions and brain function

Functional Analysis of MINI-Q II positions, and Use with Live Z-scores

A Window  to 4-channel EEG Assessment and Training 

Thomas F. Collura, Ph.D. 

This text describes the positioning of EEG electrodes and is a user-guide. It provides some interesting information on the regions associated with EEG tracing.

The full text can be found at http://www.brainm.com/help/Positions_and_brain_function.htm.

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: Back From the Brink of Life-Threatening Illness – HSBC NOW


https://youtu.be/kEc6FSI8AjA

 

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.

Link: Biological markers for treatment response in first episode psychosis – See more at: http://www.nationalelfservice.net/mental-health/psychosis/biological-markers-for-treatment-response-in-first-episode-psychosis/#sthash.ey3TBHv5.dpuf

Psychotic disorders are characterised by the presence of positive symptoms, such as delusions, hallucinations, disturbances of self-perception, and disorganization.

The full article can be found at http://www.nationalelfservice.net/mental-health/psychosis/biological-markers-for-treatment-response-in-first-episode-psychosis/#sthash.ey3TBHv5.dpuf.

Copyright © Author Stephen Wood

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.