I want to cure a disorder. Help?

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Can a man cure a disease lacking research?

I have a neurologic-visual disorder called HPPD since 1 year ago. My vision is a mess. There is no cure nor satisfatory treatment and it's lacking research. I'm 20 years old, am currently coursing engineering. I'm very intelligent and would like to dedicate 24/7 on this cause, but I don't know how to do it, where to start. I know the question is too subjetive, but: what do I do? What can a man do on my sittuation?
 
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  • #2
Evo
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Can a man cure a disease lacking research?

I have a neurologic-visual disorder called HPPD since 1 year ago. My vision is a mess. There is no cure nor satisfatory treatment and it's lacking research. I'm 20 years old, am currently coursing engineering. I'm very intelligent and would like to dedicate 24/7 on this cause, but I don't know how to do it, where to start. I know the question is too subjetive, but: what do I do? What can a man do on my sittuation?
You have a visual disorder from taking hallucinogens?

Hallucinogen persisting perception disorder (HPPD) is a disorder characterized by a continual presence of visual disturbances that are reminiscent of those generated by the ingestion of hallucinogenic substances.

http://en.wikipedia.org/wiki/Hallucinogen_persisting_perception_disorder

Treatment

Benzodiazepines including clonazepam (Klonopin),[13] diazepam (Valium) and alprazolam (Xanax) are prescribed with a fair amount of success
 
  • #3
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No, I was dosed at a party. I don't do drugs and have never done, I haven't even drunk a single ml of alcohol. Benzodiazepines are not a good treatment. They are very incapaciting drugs and have no effects for many people. Living on benzos would be no better than this. This is not the life I want.

I'm also very thankful for your answer and for trying to help, but I would really like to address the topic's subject.

Thanks!
 
  • #4
Evo
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No, I was dosed at a party. I don't do drugs and have never done, I haven't even drunk a single ml of alcohol. Benzodiazepines are not a good treatment. They are very incapaciting drugs and have no effects for many people. Living on benzos would be no better than this. This is not the life I want.

I'm also very thankful for your answer and for trying to help, but I would really like to address the topic's subject.

Thanks!
Regardless of you whether you took drugs willingly or not doesn't change things. If that's what caused your problems, then that is what you have to deal with. I am sorry if you did not bring this upon yourself.

I have taken benzodiazepines for years for problems without any trouble. Have you tried taking them? They are not incapacitating, if they can help you, you should take them, IMO.

As for wanting to help find a *cure* if there even is one, go to medical school and then into research. If that's not an option, then try to raise awareness of the issue. But this is very, very rare, and usually self drug inflicted, probably not easy to gain sympathy.
 
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  • #5
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So I'm pretty much alone. But the lack of reseach gives me hope, as we don't know anything about it yet. But exactly what do I need to do research on it? Can I do it with an engineering degree, or I need a medicine degree? How this works?
 
  • #6
Evo
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So I'm pretty much alone. But the lack of reseach gives me hope, as we don't know anything about it yet. But exactly what do I need to do research on it? Can I do it with an engineering degree, or I need a medicine degree? How this works?
You would have to go into quite specialized medical research.
 
  • #7
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A degree in neurobiology or neurochemistry might be the correct route to take if your interested in perusing researching it specifically. Especially considering its related to the brain.
 
  • #8
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Someone said I can do research in any area having a Ph.D. on a hard science, so I don't have to quit electronics engineering to start all over on medicine. Is this correct?

Changing to medicine now would delay my degree in at least 2 years, counting on the fact I'm admitted, what is complicated because it has the highest competition (100 candidates/vacancy) and my country is just unifying the entrance exham so it is still a mess.
 
  • #9
Pengwuino
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Someone said I can do research in any area having a Ph.D. on a hard science, so I don't have to quit electronics engineering to start all over on medicine. Is this correct?

Absolutely not. You need to be educated in the field you are researching. An electrical engineer will not know anything about anything medical beyond what 2 classes at a Freshman level would teach you.
 
  • #10
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So quiting electronics is my only option if I really want this?
 
  • #11
Pengwuino
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So quiting electronics is my only option if I really want this?

Yes, which probably means it's not a good idea to do.
 
  • #12
Borek
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Someone said I can do research in any area having a Ph.D. on a hard science, so I don't have to quit electronics engineering to start all over on medicine. Is this correct?

While this is not exactly correct, there is a grain of truth. Nobody is doing serious research on their own, in most cases there are teams doing the work. And team requires people with different types of knowledge, so if you will specialize in - say - medical imaging - you can become a member of such team.
 
  • #13
Ryan_m_b
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I see Borek beat me to it; you can continue into medical research with what you have but it will require some specialisation/training. My advice would be to do some research around what biomedical research courses your degree can get you onto, is there any possibility of doing a masters in medical imaging or medical device engineering?

Problem is those things may not be particularly relevant to current HPPD research. To get a better picture of your options it would be a good idea to look into the current HPPD research and identify people in the field then send them emails. A bit of googling brings up scholary articles on HPPD from Harvard Medical School, I would suggest doing more research along those lines yourself and finding someone to ask "I want to get in on this, here are my current skills, what can I do?"

Lastly I would suggest you think carefully about the possible psychological and emotional effects that persuing research in this field may have on you. Many diseases have had decades of research by tens of thousands of people costing many millions of dollars only and a viable treatment still isn't on the horizon.
 
  • #14
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So you've been to a doctor, diagnosed with this and been prescribed what?
When did you last see the doctor?
 
  • #15
Evo
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Raising awareness might be the most useful and practical path to follow. It could help getting more researchers interested, make it easier to get grant money and donations for the research, and it could happen more quickly then if you try to get involved in research yourself. You could do both, it doesn't have to be one or the other.

Perhaps you can get more answers here http://hppdonline.com/
 
  • #16
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Is HPPD a type of disorder that could possibly be helped with hypnotherapy? Maybe MrDocat doesn't need to change his/her degree, but can work with your own doctor to find something to help with the visual symptoms.

If you want to cure yourself, work with your doctor. If finding a cure for this disorder fascinates you, then absolutely change degrees to neurochemistry.
 
  • #17
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Thanks for all answers. I have to study now, tomorrow I answer properly. But it seems like the best I can do is continue on engineering while at the same time studying hard to medicine, so the best case I lose an engineering year, the worse I don't.
 
  • #18
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So I'm pretty much alone. But the lack of reseach gives me hope, as we don't know anything about it yet. But exactly what do I need to do research on it? Can I do it with an engineering degree, or I need a medicine degree? How this works?

It's been done so, conceivably, it could be done again:

http://en.wikipedia.org/wiki/Lorenzo's_Oil

The Odones were not medical researchers, but they were highly intelligent and extremely motivated people.
 
  • #19
Ryan_m_b
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It's been done so, conceivably, it could be done again:

http://en.wikipedia.org/wiki/Lorenzo's_Oil

The Odones were not medical researchers, but they were highly intelligent and extremely motivated people.
Interesting story, to be fair they did work with other scientists such as Hugo Moser and Bill Rizzo but according to wikipedia at least it was Mr Odone's idea after hearing about Rizzo's research in a similar field to use the oil they eventually named Lorenzo's Oil. Also to be clear Lorenzo's oil seems to delay the onset and severeity of symptoms but does not actually stop the disease progressing and is not a cure. Commendable work and committment though either way.
One of Dr. Hugo Moser’s longest endeavors was his work on Lorenzo's oil. It began with his relationship with Augusto and Michaela Odone, the parents of Lorenzo Odone, the namesake for Lorenzo’s oil. Hugo had diagnosed their son with the plasma assay. With the boy’s subsequent decline Hugo had suggested immunosuppression, which turned out not to be successful and contributed to frustration and tension between the Odones and Hugo. Together they organized a meeting at Kennedy Krieger where Dr. Bill Rizzo presented data that showed that adding oleic acid (C18 monounsaturated) to fibroblast cultures of ALD patients, it would reduce their fatty acids. Mr. Odone made an independent intellectual computation – namely that the use of erucic acid, which is C22:1 (C22 monounsaturated), would increase the effectiveness – and Lorenzo’s oil was developed. Controlled studies, however, indicate that Lorenzo's oil is not effective at treating symptomatic ALD, although it may delay the onset of symptoms if taken before they set in.
 
  • #20
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I mean, I'm not hear to completely call you out, but what exactly were you dosed with and how much? ... I am just reluctant to believe that being dosed once would lead to HPPD, unless it was pretty serious. Admittedly, I am no expert and it only seems "fishy" to me that a disorder that has such an extremely low prevalence would become apparent after one time with a psychedelic. Also, to what extent do you have HPPD? How intense are your visual aberrations and how often do they come? Is it accompanied by general anxiety or panic attacks as well?
 
  • #21
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Guys, I need your help again. I've been browsing though medicine programs on local universities and this is probably not what I want, too. The chemistry/math content there is almost 0; which are, along with other disciplines, I guess, necessary to understand a disease like HPPD. Also, those programs are actually focused on becoming a doctor and serving on brazilian's hospitals. This is not my goal.

I could forget school at all and study at home. This way I could focus on my goal. But I guess a degree is necessary to do research, is not it? Yet, will a brazilian's diploma on medicine really give me respect to do whatever kind of research I need anyway? I'm not sure. Maybe the programs on my country are not what I'm looking for. So again, what do I do? :/

JDStupi I know, I was surprised too, but it is real. I can describe clearly and even draw what is different on my vision, and it is not very hard to understand, too. Just imagine your vision with a plenty of photoshop/cinema effects *always* turned on. This is it. Those effects include auras, trails, lights being brighter and broader than normal, prolonged positive and negative afterimages, doubled vision. Others describe also color shifts, "breathing" surfaces, tunnel vision, visual snow. Mental health is not the same. Know that mental fadigue you get from bad sleep? I feel that slightly all day, and am never fully restored. I'm not sure what anxiety and panic attacks *actually* are, but on the first weeks I woke up middle night several times with a very weird, hard to describe and scary trippy sensations. It was the only thing that improved.
 
  • #22
apeiron
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Guys, I need your help again. I've been browsing though medicine programs on local universities and this is probably not what I want, too.

If your ambitions are serious, you seem to be in the wrong place.

There is a board devoted to the condition - http://hppdonline.com/

They are discussing approaches to cures in what seems sensible fashion. Such a board - much more importantly - can draw attention to the condition as something needing study.

It might take you 10 years even to start to contribute something useful by way of research. But through the collective effort of a board, you can start to do something immediately, while also getting on with your own life/career.

In the meantime, this was interesting speculation about how the condition could even arise...

http://hppdonline.com/index.php?/topic/680-dna-methylationepigenetics/
 
  • #23
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Guys, I need your help again.

Right this thread needs a dose of reality. OP stop being totally unrealistic.
You, by yourself cannot realistically solve your own problem.

I've been browsing though medicine programs on local universities and this is probably not what I want, too. The chemistry/math content there is almost 0; which are, along with other disciplines, I guess, necessary to understand a disease like HPPD.

This is biology, biochemistry, pharmacology and clinical science, plus many more supporting areas. So basically more depth than one man is reasonable capable of being an expert at. (Hint: This is why scores of people are involved in this sort of thing).

But I guess a degree is necessary to do research, is not it?
No, you need a lab, reputation and lots of money.

Yet, will a brazilian's diploma on medicine really give me respect to do whatever kind of research I need anyway? I'm not sure.
Of course not, you don't get a degree than get funding to do whatever you want. You have to sit and do what people tell you to do. You could get a place on a team researching this already.

It's is total lunacy to think you'd even stand a remote chance of solving this by yourself. It's doubly damaging to think about stopping a prospective career to pursue a hopelessly un-achievable goal.

I've highlighted some words above, what you CAN realistically do is raise money and awareness of the condition. You can even be a subject in existing tests and subsequent trials if you are that way inclined. I'm assuming any 'cure' you'd have made on your own would be tested on your good self anyway. So you can't be that averse to idea.
 
  • #24
I think you should talk to some professors
 
  • #25
russ_watters
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Rent the movie "Extraordinary Measures".

Most of the advice you were given was misguided IMO (not that your idea was realistic...), but Chris hit the nail on the head: Nobody does research on their own and nobody does it without someone else giving them the money to pay them and the other researchers and do the work (and buy the equipment, lease the lab space, etc). Essentially, you need to be the CEO of your own pharmaceutical company to really make something happen.

In the movie (and in the real life event), there was a professor/researcher doing work on Pompe's disease, but it was floundering because no one was interested in developing the research. So you could be that guy and maybe you'd get lucky and have some success and have someone fund your research, but maybe not. Enter the protagonist, who happened to be an executive at Bristol Myers, who had the management experience required to start his own pharma company. But you can't just go start your own pharma company. As said, you need money and that comes from venture capital. Unfortunately, venture capitalists will only throw a hundred million dollars at a 22 year old if they are trying to start an internet company. So the only realistic way for you to do this is to get a handful of degrees in useful fields for management, such as business and law, then go have a career at an existing pharmaceutical company to gain the clout necessary for venture capitalists to even accept an appointment with you to hear your proposal. Then you can start your company and hire people to do your research.

This is a bare minimum of a 20 year commitment, but there is no guarantee that even if you do everything right you'll ever find a cure for your condition. Are you really up for that?
 
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