The World’s Rarest Diseases - And How They Impact Everyone | Anna Greka | TED

[@safaiaryu12]

Thank you. I'm a survivor of a rare genetic disease that killed who knows how many infants in my dad's family. In fact, I'm the first girl in six generations to have survived, due to progressions in genetic testing and lifesaving medical treatments. My dad didn't even know that he had two sisters, one stillborn and one who died at six months. His parents hid this from him. When my mom started saying about me, "Something is wrong," and started digging into his family's history, his mom (my grandma) never forgave her. But my mom's curiosity and instincts and tenacity found the answers and saved my life. I Google my disease regularly and I love seeing more and more research pop up about it. I recently discovered, like this speaker says, that there are websites where patients with rare diseases can talk, take surveys, and find medical and scientific studies about their illnesses. The age of the internet is wonderful and combining internet searches, instant communication, and the curiosity of scientists, we will save many more lives. ❤

[@hibalatheef]

Hi,may I ask you what's your disease/genetic conditions name??

[@tvviewer4500]

It’s scary that we let people call malnutrition and miseducation genetic diseases

[@arigato544]

These are the true heroes of the society...hope to be like them oneday❤❤

[@neonennui]

I am studying for my human genetics exam, and I find it a mind blowing field. It's something so complicated, yet so interesting and eye opening, it looks like magic. This knowledge can help us understand so much about human race, and life on earth in general. Absolutely thrilling. I have the utmost respect for scientists and everyone involved in genetic research.

[@EyesOfByes]

The lesson: dont suppress your kids if they are "too curious"

[@slovokia]

There are illnesses that are common, profoundly disabling and that cause much suffering, not understood and yet the medical system pretty much ignores them and invests little resources in studying them. ME/CFS is one example. It seems easier to get a physician to accept the legitimacy of a rare illness with clear and unique physical signs and symptoms than it is to get them to take seriously the burden of ME/CFS.

[@safaiaryu12]

You are absolutely correct. However, long covid is provoking a lot of study, and it seems to have a lot of similarities to ME/CFS. I'm REALLY hoping that, like this scientist said, people will be able to use stuff learned from studies of long covid to finally get some answers on ME/CFS, and other illnesses like fibromyalgia (which I suffer from). I'm sure it was simplified for a general audience, but I was stunned recently by a podcast from The Atlantic that said that doctors know FULL WELL what the mechanisms of chronic fatigue are... and they know it's completely legitimate... but they're still treating it wrong! The author proposed that it's primarily a cultural issue. They placed some blame on prevalent outdated ideas like forcing people to exercise; even though science now says that ME/CFS patients should NOT be pushed, doctors are still stuck in their old ways, especially because a lot of issues CAN be blamed on deconditioning, so it's hard to get through their heads that you have to treat this illness differently. There's also the general American obsession with productivity, plus, worst of all, the fact that doctors are forced to work 80-120 hour weeks while in residency, and they learn to push through exhaustion... so they near universally get this idea of, "Well, ANYONE can push through fatigue if they just try." It's SUCH a damaging attitude, especially from the people we're supposed to be able to trust with our health.

[@chrispeterson8781]

Benign fasciculation syndrome is another one. It's not ALS so what are you so worked up about?

[@rachelk7555]

@@safaiaryu12Please cite your reference to the Atlantic podcast.

[@rachelk7555]

@@safaiaryu12No, doctors have NO CLUE what causes CFS or how to treat it; hence, the belief that exercise will help.

[@whitelies4988]

Very informative . I really appreciate for it.

[@sujatashakya2129]

Nice video! Very informative.

[@timkiemdautu]

Yes🎉I really love this video. Thank you❤❤❤

[@usmanmunir8356]

Thanks for sharing

[@katelambros2454]

Thank You for Learning How to Think Not What To Think

[@tommorrowriver]

Wonderful! Keep going!

[@leonardotoo4907]

0000

[@Dr_Oat]

what a presentation 😇😮

[@ayasarsour2860]

Amazing thank you

[@ankrah-twumasisebastian3226]

I hope she wins the Nobel prize

[@anasmursal297]

wonderful speeach

[@saraalsakkaf523]

Thank u too much... It is a beneficial information.

[@BasoKarathanou]

Congratulations Anna!!Iam Vasiliki Karathanou by Anastasios karathanos and Nerantzoyla Nikou Nikolau

[@cherilynroyall933]

NEXT....JAK 2 GENE....Great Podcast ❤

[@JeffreyJorge-p1p]

I cried when she spoke on schizophrenia even if it was just a mention , i wonder how much do they really know about it and if are they any closer to solving this mysterious disease i hope they get to solve it, i really want to work but having this illness or w.e it is and those not allow me to ,i wish she was very enthusiastic about getting to the bottom of the illness which genes give of schizophrenia thatll be game changing ... Maybe they can prevent people from being born schizophrenic or even autustic ..so sad i wish medicine was a thousand year advanced from today

[@-HoNgocThien]

Realistic, Meaningful, Inspirational and Painstaking!

[@Cestmoi_8]

I'm a 34 year old male with mosaic loss of the chromosome and all the doctors I've gone to before learning this couldn't figure out some of my symptoms so most of them made me feel like I'm probably being a hypochondriac that needs to eat better and get more active... in spite of the huge red plaques all over my legs and the swelling of my ankles. The last doctor I saw gave me a referral for a psychotherapist (which I happen to already have and have been seeing for general mental well being for years) and she recommended I hit the gym more often. I haven't seen a doctor since even if I don't feel well. I think maybe if I had private healthcare or could pay a more expensive doctor I'd be taken more seriously, but I can't be sure... I also have a deletion in my dna that puts me at much higher risk for certain cancers.

[@minenhlemayisela]

Super inspired

[@md.jahidsheakh3657]

I am here to improve my listening 😊

[@chrisbos101]

What about hypercholesterolemia and atherosclerosis? I have the affected gene.

[@faridashermatova3132]

I wanna go to Ted show Where it is

[@hibalatheef]

Wow

[@Mustachioed_Mollusk]

“We used what we learned about a mechanism that caused an illness and used obviously logical questioning to test if it could also find the cause of other illnesses” I Fing hope so! Is humanity so stupid still that this line of thinking is special?!

[@PaulADAigle]

The future looks a bit brighter.

[@JZGreengo]

Post SSRI Sexual Dysfunction, akathisia, post finasteride syndrome, Tardive Dyskinesia, these iatrogenic diseases cause people to take their lives. We need awareness, recognition, research and solutions!!

[@ViktorVoid]

is ted good again?

[@tarana9329]

This is great, but will the remedies be accessible to people is the question.

[@Bigshrimps]

Almost all my family and older generations who have died out have kidney failure including myself I am waiting for a transplant I have had dialysis,my mum has had 2 transplants and done dialysis , my brother has had lots of operations, my great grandmother died in her thirties from kidney failure, it’s a crap genetic disease that rules our family

[@adigerlaprasad5348]

💐💐💐🙏🇮🇳

[@jennyskeen3826]

Greetings Ma'am; is there any hope for people like me that have Macular degeneration for a cure in the near future?? In less than 20 years I will be unable to see anything in front of me, only the around the edges in both of my eyes. (Mac tel 2) If you want a volunteer to study and/ or experiment with please let me know, thank you.

[@elmehdiezziar]

😎

[@devilbutcher2933]

the speaker looks like danger the abella

[@donnahaynes8766]

I noticed that the history appeared to be all male. Did that help to lead you to the the conclusion or was it immaterial?

[@SchrodingersBs]

They only impact everyone when there are corporate profits & tyrannical, government policies to be made.

[@SvenErik_Lindstrom3]

What TED did to Coleman Hughes is a disgrace! A completely idiotic forum.

[@nvention20]

what did they do ? i see Coleman's talk is posted here on YT and the TED site

[@Bushman9]

Nobel prize?