ULPT Any way to make lemonade out of an ultra-rare disease?

Posted by 3D-Sprinter@reddit | UnethicalLifeProTips | View on Reddit | 39 comments

I'm in the process of getting diagnosed for a disease that affects (very roughly) 1 in 10,000,000 and got to wondering if there was any way one could make some lemonade out of some very rare and crappy lemons? Was sort of thinking along the lines of gofundme nonsense but I'm not as creative as y'all!

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VixenTraffic@reddit

Yes! Get into a clinical research trial.

My disease isn’t super rare but the cure is a long way off.

Treatment is still very new, there is very little hope. So I signed up for a research trial.

The meds alone are over 30K, but all the testing, treatment, and doctor visits cost way over a quarter mil, and I get it all for FREE.

The hope is free too.

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Cool_Offer_5490@reddit

Inb4 congrats to the control group

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Novel-Structure-2359@reddit

It depends on what you consider lemonade.

if your disease is genetic then there should be scientists interested in treating it/curing it. You could offer to share tissue samples so they can make a cell line out of it to let them carry out heaps of experiments. Our group does that for sufferers of the condition we focus on. Cell lines can essentially last forever. The first ever cell line was isolated was in 1952 and they are still going strong.

You might be able to get them to fly you out to wherever they are based to extract the cells and maybe give a talk about your personal experience.

It is important that, depending on your prognosis, the experiments may not work out in time to cure you but it might save future patients. I realise this may be cold comfort but it is also a thing that often is the case.

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Ecstatic-Will9484@reddit

If only it were that easy. I have a condition that is the only one of its kind in the entire world and yet I can't find a single scientists to help investigate it further. The fact that it's never before seen or heard of is an immediate deterant.

I'm experiencing glass like crystals and bio-metals coming out of my skin. They occasionally get stuck and have to be removed. The metals appear to be magnesium, iron, copper, calcium, zinc and gold. I never knew there was gold in the human skin until I started getting these yellow shiny bits of metal appearing out of my skin.

Given my research I'm certain it's genetic cause something this bizarre and rare usually has genetic origin, plus I already have several genetic conditions and also relatives on my parents side with various genetic issues.

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3D-Sprinter@reddit (OP)

It is genetic and travel is pretty tasty lemonade! Thanks for your advice and for working to help people in similar situations

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Anxious_Impact1608@reddit

How tf does lemonade connect with a dodgy ass disease 😭

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Material-Win-2781@reddit

The saying saying if you have lemons make lemonade...

Basically turning something sour (sickness) into something sweet (low effort money)

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Anxious_Impact1608@reddit

Okay haha that's a good association :)

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trashpandorasbox@reddit

Watch “apple cider vinegar” on Netflix and do that (without the dying because of not listening to medical doctors part). Basically an overhyped way too expensive lifestyle brand built around supporting your wellness journey living with an ultra rare disease.

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3D-Sprinter@reddit (OP)

that's the kinda unethical I had in mind when I posted this! Just gotta figure out how to shill something I don't believe 🤔

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trashpandorasbox@reddit

That’s the thing: shill something you believe that just isn’t worth the money! Organic lemonade is delicious and does brighten my day, this weighted heirloom blanket woven from the wool of only the cutest baby alpacas does help when I get cold at the Dr.’s office. It’s all true, it’s just not that true lol.

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MisterSlosh@reddit

Contact some learning medicals schools or appropriate research institutions and see if they have a study program you can get in on and get a bit of satisfaction in helping the next person. Maybe even a cut of the grant money for participating.

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Skyblacker@reddit

You can sick AI on it.

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3D-Sprinter@reddit (OP)

I don't want to give away too much but there aren't any known cures and drugs that have been tried for treating symptoms have been ineffective. I appreciate the thought, though!

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VixenTraffic@reddit

Drugs that have been tried, so far.

New drugs are discovered all the time. Sometimes current drugs work on things without reason.

Don’t lose hope.

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Skyblacker@reddit

What the aforementioned AI does is reads medical journals to see if the side effects of pre-existing drugs might treat diseases too rare to justify their own drug development.

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VixenTraffic@reddit

What AI can’t do is accidentally discover that a drug like Viagra, which was developed to treat angina, can also have the unintended result of, well, you know.

There may already be drugs that can treat your illness, just waiting to be prescribed to someone that has two things, what it was made for, and what your have.

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Skyblacker@reddit

Of course it wouldn't be accident. AI would see the reported side effects of a drug and see that, oh, that might be useful for another condition. Human researchers do this too, but AI can read a lot more texts in the same time.

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Mysterious-Novel-834@reddit

If it's fatal, wrack up some CC debt lol.

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LetsGoAcrossTheStyx@reddit

This sentence is wild. "Lol" after "if its fatal." 🤯

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Flux_My_Capacitor@reddit

Not all rare diseases are fatal, genius. 🙄

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GTholla@reddit

I don't even agree with the guy you're responding to necessarily but you realize nothing in their comment makes yours make sense, right? Like, dude was pretty clearly pointing out that it's strange to add a 'lol' to a comment about someone dying of a rare disease.

I don't even agree with the sentiment, because people cope with stress and trauma differently, but it's obvious they weren't referring to what you think they were.

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LetsGoAcrossTheStyx@reddit

Where did I say that they are? I said that a literal "lol" after saying "if a disease is fatal, rack up credit card debt" is a wild sentence. It is, ~~genius~~ dickhead.

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dritmike@reddit

Research studies. They’ll pay you.

Monetize this disease

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