Medical Mysteries and Rare Diseases: William Gahl at TEDxCMU 2011

[@juliettemacdonald5792]

BRAVO!
This is the FIRST Ted speech that REALLY RAISES AN IMPORTANT ISSUE!!!!
I will certainly follow your advice + CONTACT THE ORGANIZATIONS YOU MENTIONED!
I applaud + “Thank-You” for bringing this problem to the attention of the public!

[@1988gala1]

This needs more publicity, excellent talk

[@dee62383]

This man is a Godsend! His abilities are long overdue to say the very least. As a person who suffers from a medical mystery, I can appreciate this fully. I am beyond frustrated with this illness and all that it has stolen from me.

[@hkdawn]

Those of us with Hermansky-Pudlak Syndrome know Dr. Gahl well. He's such a brilliant and caring physician. We love him. As people with an ultra rare disorder, we hope and pray that some of these issues are solved. We pray and cheer for our researchers daily. When they make a breakthrough, it would be such a tragedy to have it tied up in red tape while we pass away from our disease.

[@joshistephen4766]

wonderful talk

[@sharasiar]

Full support for such an initiative. I havea rare disease, and only people like me can relate to this problem. Good luck to Dr Gahl and his team. I got to know of his NIH group through a recent Scientific American article. This is as close you get to a real-life 'Dr House' setting.

[@katiatannus3146]

The comment about what pipers mom said broke my heart. No mother should ever watch their daughter die, because they could get not treatment 😢😭

[@phyllisverzella5825]

Thank you Doctor.

[@veradugomrivera4274]

30 K views plus and counting.. November 1, 2019..dr william gaul
you are 👼💯🥰

[@heatherr1141]

How do we know if we are eligible to be checked for rare disease? I feel I should be eligible if I Knew what to do or who to contact. I’ve been to many specialists and still left with lots of unanswered questions. I’m very sick and very frustrated. I’ve been at this for 16 years and sick way longer. I got worse after getting mono 16 years ago and it continues to get worse. My list of symptoms is long! I appreciate a Dr who cares about lives and has empathy. This was a great presentation. I was told Myopathy, Myasthenia Gravis, Dermatomyositis, Possibly Lupus, and so many more but never fully had enough criteria to fully diagnose. I’m worried it’s going to be too late by the time I get any answers and I’m frustrated. If someone knows how I can get help from this rare disease place please let me know. Thanks

[@veradugomrivera4274]

dr William gaul- this is you 👼🥰😇💯

[@Rob_0011]

How does this not have over millions of views??

[@o0o-jd-o0o95]

Because most people don't care about this stuff they're too busy worshipping Kim Kardashian and Kanye West in the hopes that it will make them famous as well. tedX talks has 33 million subscribers on youtube. Kim Kardashian has 236 million followers on Instagram so you tell me what's more important???

[@TheGuineagirl101]

@ludlloy well, I do see your point about a good diet and maybe all these anti-bio-tics, additives and hormones in our foods,etc. is what is making us sick. I was talking about illnesses that are not diet-related like a heart condition such as aortic stenosis, where the aorta is narrow by nature; however so much of the health problems in the world could be helped by a much better diet; like we need any more greasy double fried chicken wings and 8-topping pizzas! Sorry if I sounded mean!

[@phyllisverzella5825]

Please updatate material to 20202

[@haleyann6996]

The risk versus benefit should be taken into consideration more seriously in cases such as the ones Dr. Gahl described. I find it very hard to fathom the number of people that are dying because their potential cure must go through a long list of trials that can take much longer than they are expected to live. If we want to find cures for rare diseases why take so long for the medication to be used? I believe that if someone has a rare disease and they have exhausted all other options then they have nothing to loose by trying the medication. The risk of something happening wouldn't be as substantial especially if they are expected to die anyhow. It could potentially be a benefit to that person if the drug works for them. You have to remember these cases are rare, so when someone is on their death bed with one of these rare disease we should jump on that opportunity to try and find a cure and possibly even save their life.

[@saleemisgod]

I've noticed that the digestive juices aren't a factor in the raw vs cooked food argument.

[@nothing80400]

value of an open exchange SOME TIME ALSO WITH BILL

[@redeyeboy1000]

The thumps down i take it are 10 FDA.

[@grettagrids]

Through. Genetic testing. I've been diagnosed with ehlers danlos.

[@PrestigeSeattle]

I think he should teach others how to do this so more diseases can be cured!

[@AThike]

I’m sure an exception would be made for a high ranking politician.

[@kgaccount]

Wow. 8:10 =Hard truths.

[@madmh6421]

Treatment for hep C, some say is effective was available in Europe for 18 years before being approved in the US. No doctor told me!!!!! AMA sucks!!!!!

[@tantrumskid]

The lady who had Multiple Myeloma should have been diagnosed by local specialists. The fact that she made it all the way to NIH before it was found is just an example of how shitty many doctors' diagnostic skills are.

[@mauragrier6958]

🙌🙌🙌🙌🙌🙌

[@drrajendrasheregarrajendra3463]

Exceptional medical science Challenges exceptional patients cases/ emergency operations and emergency medications Instant resolving Many rare cases Methods at institute of medicos open Google doc Rajendra sheregar See videos images discriptions Medical science institute

[@andidreyes5323]

Primary Scerlosing Cholangitis will be my personal murder weapon and indifference to the disease my murderer. When I was told that I had this, on top of the Crohn's disease and Fibromyalgia which gives me PTSD episodes and depression with suicidal ideation... I was calm. I asked the transplant surgeon, my GI, my pain specialist, & my primary physician for their honest opinion about my chances of simply getting on the UNOS list when I need it... and after MUCH hemming and hawing with plenty of blah blah thrown in; the opinions were not a chance in hell.
I have a teenage suicide attempt, a psychiatric ward stay about a year after my mom died during a PTSD depression, I'm on Suboxone and its been a long term thing for the Crohn's and Fibromyalgia pain, etc.

[@freni223]

Andrea DReyes I hope you will find health and peace soon. Hang in there , I know you have made a long tough journey but you are even stronger then you think you are. Find ways to laugh and be happy.

[@cindyhalpern3187]

You fly these children outside the United States to save their lives.
Do not let the FDA kill these children!

[@grettagrids]

NO ANIMAL. STUDIES!

[@TheGuineagirl101]

@ludmilalloyd Yes, I do agree that prevention is important when a disease can be prevented by a good diet, exercise and avoided substances like alcohol and drugs; however, would you say that a person with William's Syndrome is stupid to look for help for her heart problems, calcium problems, and other issues? Medicine is a gift from God and people like you just blame the victim for their illness and spread lies about doctors. I would not be alive if not for the medical profession!

[@joecoolioness6399]

Surprises me that people still pray to god after children die. If you believe in god then you believe he created everything and has a plan for all life. So he gave that child the condition that killed it, devastating the family, which makes no sense at all. In no universe, created by a loving god, would this happen. So either god doesn't exist (this is what I believe based on the complete lack of evidence to the contrary) or he is not a loving god.

[@reneeklein9159]

I 💯 agree with you. I was raised super Roman Catholic… most of my graduating class became nuns or priests… just to give you an example. My whole family was super religious. I’ve lost a 21 year old niece I raised suddenly, then my stepdad suddenly, then had 2 seizures that were so severe I was on life support, I have memory issues now, lost my job because I can’t drive due to my seizures, I have constant tics and spasms, severe migraines that last for days with me throwing up constantly. I had to have my kids move in with their dad because I couldn’t afford the rent because of my lost job…. The pain in my legs becomes so unbearable sometimes…. Just a whole host of odd symptoms and have spent months and months going to doctors and second and third opinions….. so many tests… it’s exhausting. I completely agree with you about god and it’s annoying that everyone thanks god for everything.