Why rare disease isn't rare | Mark Dysinger | TEDxUniversityofMississippi
Video Overview & Insights
Rare things are often highly valued, but when it comes to rare diseases the label may have the opposite effect. Mark Dysinger challenges our understanding of rare diseases and encourages more effective support for the people living with them. MARK DYSINGER is a research scientist at a company that develops therapies for rare disease patients, while taking issue with the label "rare." Dysinger believes that labeling a disease as rare diminishes it to a medical curiosity, resulting in delayed diagnosis for patients. Mark has over 25 years’ experience in the pharmaceutical industry and holds a Master of Science degree in biotechnology from the University of Maryland University College and a bachelor’s degree in zoology from the University of Maine. As a rare disease patient himself, Dysinger's duality as researcher and patient provides him with a unique perspective. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
Yeah, those numbers actually get pretty big when you add everything together.
More User Perspectives
That's fully it though the people who care about you will always go to the effort of educating themselves on what's affecting you and they will NEVER see you as some debilitated person who just can't do anything
@mikehweavercouldn't have said it better myself!
@theoscarnunezI have a pretty common illness and even that was a nightmare to try and get diagnosed so I can't even imagine how frustrating it would be to live with a "rare" disease and try to manage all of that
@greennight1239Yeah I've heard so many people be like "oh this rare disease that affects only 2% of the population." yeah okay but that's still like 160 millions people??
@imadampiercewhen you said the sticky notes became labels like dreamer and careless, it made me think of my third grade report card and how maybe some of those things have stuck with me more than I've realized
@lanazajaI really want to agree with him but there are so many issues with the healthcare system as is I feel like it's going to be a long time before anyone gets around to this
@randisohOh my goodness what a scary thing to have! I mean before he knew what was going on. Just randomly collapsing would be freaky as all heck
@chelseaavaonil1380Man the horse/zebra thing is so true and can't imagine how frustrating it is for all the actual "zebras" out there lol
@real_name_hidden577The karate story tugged on all my heart strings.
@-GreyMatter-Couldn't agree more because we have cures and treatments for all kinds of things. Can't help but think pharmaceutical companies aren't motivated enough to develop treatments because it doesn't affect enough people for it to be profitable
@craigjohns7665This is really insightful. It reminds me of how scientific advances in space exploration have given us technologies that ended up having huge applications elsewhere.
@Team-CozyMy friend just got diagnosed with Lupus, and while it isn't really considered a 'rare disease' it took her 6 months of tests and going to specialists to figure that out. If it was that hard for her, it must be even worse for people with rarer conditions.
@walet6972Yeah, that 'if it runs like a horse' heuristic makes some sense but it definitely doesn't account for all the possibilities.
@thereallyfatcatIt makes a lot of sense to think of rare diseases collectively like you say!
@samanthaabadiAn ex of mine was recently diagnosed with subglottic stenosis and it sounds like their experience echoes yours a bit, appreciate the perspective
@HeyItsMeHarperSullivanVery well done! Thank you for sharing and further educating me, Mark!
@quinsmumIncredibly powerful talk! 🙌
@askcesarThis is amazing! Thank you Mark! It’s so weird to be a family of over 10 with HKPP in a small town. However- with people like you we will make progress and change the medical community to truly understand us!!!
@lesliewengler5297Knowing this amazing gentleman I can say, please listen and take to heart what he has to say! Well said sir! We love you always!
@xGarezAngelx