The Return of Thalidomide 

Your mom and that guy both are decent people. Hope they're both well and happy

Your mom sounds amazing. Most individuals with limb differences or other more visible disabilities often have to deal with parents either giving their kids bs reasons for things or parents telling kids not to stare and then moving away. Both things are exceedingly dehumanizing to feel, so most of us actually prefer questions to be asked nicely like that so we can educate the next generation and help ensure that their treatment of the disabled is better than previous generations. I have hEDS, so while my disability isn't always very visible, it definitely can be. I dislocate my hips sometimes when I have to make quick unexpected movements with my lower body, and same deal with my shoulders. My arm or leg bending in a freaky direction can be pretty disorienting for people to see, so when parents with kids see it happen they often gasp and their kids ask how that happened. Unfortunately, most parents say don't look, somethings wrong. They don't even notice that I'm perfectly calm and proceeding to put my joints back into place while they shield their kids eyes. Those who don't react like that cry out and ask if I'm okay, they calm down when they see I'm calm and often those are the parents who let their kids ask questions so long as I'm okay with it. I really appreciate that when it happens because it means I can tell the kid about what happened and why and maybe help them act more appropriately the next time they see something different. True curiosity born of wonder for the world is never a bad thing, it can however be expressed negatively so I always appreciate a chance to help young kids learn how to express their curiosity and wonder in a way that is kind.

I once asked a woman who had short arms due to thalidomide, how she wiped after using the toilet. She thanked me for asking instead of just looking at her weirdly. Turns out that while there are devices to use, they're bulky and a pain to carry around, so instead she uses her heal. How amazing is that!

My mother was a quad amputee (occurred when I was an adult due to sepsis) and I agree with both the individual in the elevator and the other accounts provided here, people who experience disabilities prefer to be respected and when you provide genuine interest versus weird stares, they definitely appreciate it. My mother was quite outspoken, she would ask them to take a picture since it lasted longer. Haha!

​@@terranovarubacha5473that take help you visualize her wiping herself? What a personal question to ask... And then share online. Smh

Gotta go to work, gotta make that money at the end of the day everyone has bills to pay, I hope this is not the reason but we should see everything from both possible sides.

What do you mean?

@@elio7610 how do you think Hank makes money? He makes RU-vid videos and runs a small network of channels aswell as other things.

@@sscjessica He has stocks in amazon, is the CEO of at least 2 companies and is a best selling author, as well as clearly not living extravagantly. He absolutely could just stop working if he wanted to and be fine.

@@DayInDaLife Says the person who has bought into the ableist WARRIOR SICK AND DISABLED person trope. Stop it.

For anyone in the same situation: It is promising to combine chemo with fasting because while fasting the metabolism of healthy cells changes and this starves cancer cells (whose metabolism cannot change) plus healthy cells become less vulnerable to chemo (this reduces side effect). It is well researched for mice, for humans there are as far as I know only studies with lower numbers of participants (where a massive reduction in side effects was found), however for some people there can be risks so it is best to discuss this in detail with a doctor.

@@rosawolke2788 Do you have a source on that?

@@volderhamern you read and look for your own research? Come on it’s. 2023 every single uni in America posts all their research, papers, and studied online

@@blank1778 If you make a claim like this you need to be able to back it up with some kind of source, because misinformation in that field might be harmful. I'm not asking for myself, I'm asking for everyone who reads this comment. Also not every university/institute publishes their research online for free, ESPECIALLY not in the U.S..

@@rosawolke2788 you missed something important. ALWAYS, ALWAYS, _ALWAYS_ talk to your oncologist before starting ANYTHING relating to cancer treatment on your own.

Frances O. Kelsey. She was a hero.

So much agreement. Frances Kelsey is one of the greatest humans that ever existed. Her name, along with the likes of Yuri Gargarian and Albert Einstein should be known by everyone.

Hank, I just want to wish you a full and fast recovery and hope you’re only suffering minimum side effects if any from your treatment.

@@annettehenry2083 u put your comment in a reply section by accident :)

actually i think the story said that the drug was being sold in germany?

Did it work?

@@caram4746 She died, but a lot less nausea on the thalidomide. She was stage 4 when the cancer was found, so we knew she was terminal.

@@LadyLenaki RIP

She was careful to not get pregnant…but was she careful to avoid getting someone else pregnant with her sperm? Lol fascinating facts in the video.

My 65yo mom in law took it with kidney cancer chemo... she had a hysterectomy and still had to sign the ppwk 🤣

Same like oh my gosh

Well, he shared it quite a while ago. It was even in big newspapers.

​@@1IGG Many people don't read newspapers anymore. Also it was less than a month ago.

And no pelicans this time, even! Someone fetch pelicans

Lol I’m so sad now

Yeah, there's a reason it was included in "We Didn't Start the Fire" by Billy Joel.

The worst thing is all of this could have been easily prevented if they would have tested Thalidomide on pregnant mice. But just like today pharmaceuticals are not tested gender specifically and this means tests are only performed on males because there is less hormonal imbalance and therefore easier.

@@Anonymous-df8it Gender specific in medicine refers to the influence of gender on health, diseases, therapy and prevention of illness. If you assume that (pregnant) females respond to pharmaceuticals in the same way as males without verification through research, this is not gender specific. You took the definition for each word of this technical term out of context.

@@rosawolke2788 Why the hell are there multiple definitions?

I remember visiting my family in Germany in the late 90's and we were in one of those little medieval towns in Lower Saxony. We were sitting in a café and there was a woman in her early 40's sitting at the table next to ours and she had hands of a 3 year old (not arms, just hands growing out of her shoulders), drinking through a straw. I remember trying not to stare at her (as I was a 8-9 year old kid) but dying of curiosity. I guess she was one of these Thalidomide children, I've never seen this since then.

I’ve thought about how people born without the same limbs as most people seem to adapt better than someone who lost the beneficial use of a limb, which makes sense.

the medicine packaging is also covered in warnings, too

Man getting Isotretinoin sounds about as hard.

Sorry if this is a dumb question but was their periods of remission in between? How long can someone actually go through treatment for continuously ?

Glad to know ups has been manageable thus far. I’m rooting for you!!!

@@erikarussell1142 Thank you! I don’t normally talk about this, but I feel comfortable here.

I hope that kid went on to live the life they dreamed of.

​@@Omniverse0They? Who joined him?

My godmother was a thalidomide kid, & you took great care not to peeve her off too badly, bc her left arm was only half the length of her right, & would leave 2x as many bruises as the right. 😅

@@Svensk7119take it up with Shakespeare

That's awesome. As someone with major health problems I think people using their disability to make people laugh and learn. Sometimes humor is the only way to go

We met a guy who's mom got given it from a chemist in galway I think or kerry they still had it on the shelf. I took a drug which was given me for ear infection it has been banned for use except as a chemo drug on the 11th of that month. I had bad side effects after 2 tablets that lasted a whole month and were horrible. I found out it was banned ...First I googled is it good and got lots of positive google results then I got the side effects and googled the drug and side effects and got all the bad google results. They said it had been banned. I went to my doctor cos it said if you have any of these stop taking and go to doctor. I told the doctor it had been banned and he started shouting at me and threw me out of the clinic and alamed the door in my face. I was so upset. I then rang the departments of health and the college of surgeons to ask about it and complain a bit and it turns out ireland doesn't tell doctors when a drug has been banned. They have to find out themslves. Now 1000s of drugs they hand out every day theyre not going to be googleing is thus banned and finding out. They dont have sone sort of newsletter or website. Like there's a website for products that have been taken off the shelves like washing machines and bad ikea bowls and stuff. But not one for drugs so doctors could look and see oh these 5 drugs were banned this week or whatever. Anyway I went again about my ear years later and the guy suggested the same drug I said no thats banned. He said no no I give it out all the. Time every day... I said its banned by the eu for the horrific side effects google it. He eventually googled it and hmms and hawed and then I said so u shouldn't be giving it to people every day. And he said he never said that I was mistaken ..just flat out denied saying it. It took 15 years to get the drug banned its called foruaquinalone for anyone interested ..it can cause peoples heart valves to collapse cause psychotic terrifying symptoms cause tendons to rupture and interferes with cell metabolism. Its not detectable in the body once absorbed. It doesnt brrak down in the water treatment plants either. Nothing breaks it down. It's a scary drug. Some people have a life of terror after it. 15 years of campaigning god it restricted banned for use unless as a chemo drug or like last ditch effort drug terminal cases ...and nobody knows and they're just handing it out. For ear infections. It doesnt even say on the packet ..maybe it does now but it was only two weeks after it was banned that i got it. anyway that's my life story for ya since ya didn't ask. 😂 stay safe. Google everything in the negative to see the bad results before taking anything. My doctor has also prescribed other things like lexipro for my ear issues which she said when i asked what are the side effects she said there aren't any and dont be looking it up on the net. She thought I had anxiety but I had a fungal war infection. She thought I was a hypochondriac but I was just anxious going near a doctor.

And for those from the German speaking areas of the world wondering. thalidomide is the name for the drug in at least the US and also the name for the active substance and mostly unknown to German speaking folks related to those birth defects. In Germany and I think other German speaking Countries it was actually brought to market under the name "Contergan". So the active Substance of Contergan was indeed Thalidomide.

​@@alexanderkupke920thanks! I suspected this was Contergan from how the video described it, it's good to have confirmation

It's also not a treatment for leprosy, just erythema nodosum leprosum (ENL), a skin complication of leprosy.

@@bruh-xe7ue How does this make sense in the context of either comment? I think I can almost guarantee that your negative attitude and low quality jabs at other people are not welcome on this comment section. Be better.

He has Hodgkins Lymphoma, which is one of the “best” cancers to get in so far that the treatments are extremely effective. His prognosis will be pretty positive I think. Still sucks to go through though.

Expect more people you love to get cancer, those jabs are working as intended.

The worst thing is all of this could have been easily prevented if they would have tested Thalidomide on pregnant mice. But just like today pharmaceuticals are often not tested gender specifically and this means tests are only performed on males because there is less hormonal imbalance and therefore easier.

@@rosawolke2788 If they're only performed on males, then they *_are_* tested gender-specifically, by definition

I am on Revlimed for Multiple Myloma after a stem cell treatment last summer. On 21 days and off 7. Has anyone on it had issues with swelling and weight gain? My doctor claims it shouldn't cause that but next month she will be reducing from 10mg to 5mg. The other side effect that is more annoying than awful is constant upset "stomach" or rather very loose and frequent stools. I hope I can off it one day but still thankful that it is keeping new myloma at bay because I am in remission and feeling better than I have felt in years (except for sore joints and those bathroom trips but drinking lot of water helps a lot!) I am active at work and strong physically - In a supervised exercise program and no problem lifting.

I took this for only one week as an in patient in addition to other chemo. They made me sign a document in about 10 different places promising I wouldn’t get pregnant while taking the drug. Not for a certain amount of time before and/or after, only the week I was actually taking it. As an in patient. Where the hospital staff strictly control who comes in and out of my room and I had zero privacy. Where I was barfing so much I could barely get out of bed. After I already had way more intense chemo that they confirmed with tests made me infertile. So yes they really have to cover their asses legally speaking when it comes to the risk of birth defects.

Also used for some MDS variants.

My grandmother got it for her multiple myeloma in 2007, but she was long past menopause when she went on it (I think she was 76 when she was diagnosed).

Yes every month they call before shipping it out and say the same thing over and over. I just say uh huh uh huh while I work

Get busy living or get busy dying.

This is also a huge boon for his health. Staying active, keeping mostly to your typical routine, finding catharsis to cope with stress- they're all positively correlated with positive health outcomes across the board- from cancer down to the common cold.

As soon as the video started, I immediately scrolled down to check if this was an old video or if he just has superpowers. Continuing this type of work during chemo treatment is not something mere mortals would typically do.

I’m a cancer survivor. You can beat that nasty little monster. All the best.

Lol, people with cancer don't get depressed and sad as a matter of course .. they get sick .. more often than not as a direct consequence of the treatments.

Mine too; all good feels to you

On the one hand, good on him but on the other, hope he doesn't push himself to do this stuff because he feels he has to

He's keeping good track of his schedules so they line up with his therapy on what he should and shouldn't push himself to do, his brother is also taking over a lot of responsibility behind the scenes while Hank recovers.

That is a fair description. I agree with you.

His prognosis is good. Hodgkins is the one you hope the doctor says if you are diagnosed with lymphoma.

I just assumed it was recorded pre-chemo... I was taken aback when he mentioned his chemo.

​@@EricaGametI was too because I thought he said on Twitter that he was going through hair loss

Guelph Ontario?

Did it work?

How's puppy doing now?

@@TheKrispyfort 20 years ago... :(

What kind of cliffhanger is this

Congrats on finishing chemo, and good luck with your scans!

Congrats!

Congrats on kicking cancer's ass!

Great to hear! I had R-CHOP x5 rounds, and an auto-stem cell transplant for NHL. Porta-caths are awesome! Thanks to the above, now 8 years cured.

Im on rituximab for multiple sclerosis. have been for ten years. I have no side effects except needed an extra nap the next day or two

Thanks for mentioning those, it's amazing this plant produces multiple effective pharmaceuticals 🤩.

Periwinkle? That's not a weed. It's a great ground cover.

@@user-ov4wr5yu4r It’s not native to Queensland and covers everything, so it’s a weed.

+

Had a coworker with phocomelus back in the 80's. He was a sketcher in the art department, and it was fun watching him hoist mugs of beer on payday happy hour with the hands growing out of his shoulders.

@Liz Ross As the bone is not under normal loading and stress it's density is an issue. Thus my shoulder bone density is like someone with Osteoporosis. I know that since my early 20s it has been an issue.

@Liz Ross Thanks for sharing. Just curious how does you status impact your legs? If you prefer not to post publicly I understand.

@Liz Ross I get that as I use my right foot like a hand quite a bit.

@Liz Ross Nice, I'm not sure about the hand as I'm missing the right arm. But definitely right footed. Devon as in the SW of England? Nice view in your backdrop photo.

I guess be thankful your father wasn’t born sterile

I have a student right now who suffered this. He's in an electric powered chair but he doesn't have any forelimbs. He basically uses his elbows to do anything. And he's young

How are you doing though?

​@@KNR90 Is his mother from a country that didn't ban the drug or have extensive precautions against pregnancy? I'm just wondering how he ended up with the effects of the drug as a young guy.

@@pants6416 Yeah, it's still used in poorer countries

Well of course. How else is he going to pay for his treatment? Run a meth lab?

​@@lenabreijer1311 He owns two companies, has written two best selling books, and does a lot of his work to make money for charities not himself. He could live comfortably and do nothing during his treatment and not get even close to being in danger of going broke. He is very lucky to be in this position where he is choosing to work through his treatment instead of needing to work to be able to pay for it.

​@@Elijah-eg1xtand runs several youtube channels. 6 -8 at least

Our unpayable debt!!!!! ♥️