CADASIL Documentary
Uploaded on Sep 24, 2007A clip from a BBC documentary relating to CADASIL featuring Jack Shields and other sufferers. WMV from http://www.cadasiltrust.org.
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C.A.D.A.S.I.L - A Familys Story in Less Than 5 Minutes.
Published on Jan 30, 2013Story of a Family with a rare disease and effects on their life
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Faces of CADASIL
Published on Mar 14, 2012View the Faces of CADASIL, a slideshow video about a rare and serious genetic disease that is believed to affect many more people than have yet been diagnosed. CADASIL is sometimes misdiagnosed as MS, as patients may have similar symptoms. MS medications can be detrimental to CADASILians. People from ten countries are represented in this video, but a world map of CADASIL would show patients from all over the globe. CADASIL does not discriminate.
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CADASIL Explained
Published on Apr 29, 2015Swati Sathe, MD, of Rutgers New Jersey Medical School summarizes the natural history and pathophysiology of cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL), a rare neurological condition.
For more information, visit cureCADASIL.org.
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What is CADASIL Syndrome?
Published on Apr 26, 2012A science disease project that goes over what CADASIL syndrome exactly is...
Music "Kalimba" by Mr. Scruff.
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CADASIL - A Families - Fox 9 News
Published on Feb 16, 2014Story of a Family with a rare disease and effects on their life.
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CADASIL Thoughts of Patients and Families
Published on Feb 14, 2014This is a Neuro 2014 Film Festival entry. The film aims to raise awareness about the need for why more funding is needed for research into the prevention, treatment, and cure of brain diseases such as a rare genetic disease, called CADASIL. CADASIL is a rare, hereditary disease that is often misdiagnosed and underdiagnosed; patients suffer from damage within the small blood vessels, within the brain; CADASIL causes multiple strokes and TIAs (transient ischemic attacks; mini-strokes); This a progressively debilitating disease; The progress, severity and specific symptoms are variable from person to person and can include migraines, headaches, small strokes, strokes, gait problems, mood disorder, anxiety, depression, apathy, fatigue, cognitive decline, short term memory lost, dementia and many more symptoms. There are no age limit, gender or ethnicity boundaries with this disease.
Submit a video telling your - or a loved one's - story about why more research is needed to find cures for brain disease.
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I Just Found Out I Have CADASIL
Published on Feb 16, 2014Standard YouTube License @ Cadasil Non-Profit
No one Cares About a 11 Year old who is Sick
Published on Apr 23, 2014SSTattler: Maybe she has CADASIL? genetic? not known?, ...?
Since Jan 2012 Aleaha for 2 years, she has been throwing up cannot keep solids down and is malnutrition due to GI problems, but has no root cause or diagnosis. Medical Professional say she have a problem Failure to Thrive. She has started to lose her hair. She has had 6 feeding tubes Presently in hospital with a Peg and pending G Button in her stomach instead in her nose. She has had 10 hospital stays within 2 years 4 months. She cannot function as a normal child, cannot go to school and is home bound. She might have an autoimmune disease treatment is feeding tube daily different times of the day. Depressed on anti-depressant medicines, Ceculatis, system disorder, inflammation of the stomach and intestines, vomiting, abdominal pain, headache, pancreas inflammation, fractures, Inflammation of the Stomach intestines, Pancreas, Removed Gallbladder. She cannot be a normal 11 year old because of her chronic health.
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What is a Rare Disease?
Published on Jan 16, 2015In the United States, any disease that affects fewer than 200,000 people is considered rare. There are nearly 7,000 rare diseases.
Although each disorder alone affects a small number of patients, together they impact nearly 30 million Americans -- that's about 1 in every 10 people. Two-thirds of these are children.
There are certain challenges that all patients and families affected by rare diseases share. In addition to devastating medical problems and symptoms, it can take years to get a proper diagnosis. People with rare diseases can feel isolated as they struggle to find information and connect with others like themselves.
Research to find treatments for rare diseases can be more difficult. For example, until two years ago there were no approved treatments for myelofibrosis (my-lo-fi-brosis) -- a rare and life-threatening blood cancer that affects nearly 18,000 people in the U.S. Thousands of other diseases such as CADASIL, glycine encephalopathy, and Leigh Syndrome still have no approved treatments.
The National Organization for Rare Disorders (NORD) and its more than 200 member organizations can help those affected by rare diseases find information and connect with one another. NORD is also committed to helping patients access diagnostics and therapies that can extend and improve their lives.
NORD is proud to be the official U.S. sponsor of Rare Disease Day, a day dedicated to bringing widespread recognition of the challenges faced by people living with rare diseases. Rare Disease Day is February 28, 2015.
Alone we are rare. Together we are strong.™ Visit www.rarediseaseday.us and show your support by liking the Rare Disease Day Facebook page and following the Twitter feed where we encourage you to share your thoughts and experiences — because together we can make a difference.
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