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50 years, 21st century? where is our cure?


Guyindubai
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I simply refuse to believe that after 50 years of patients going to doctors and spreading the word about HPPD, that there is no cure found for HPPD, either really doctors dont care about this disorder. or they cant find a cure.

 

Because in this current world we live in, the technology is so far advance.. they have such advanced medical technology yet we can cure a disorder or a disease that has been there for 50 + years?

 

We live in the 21st century where everything has reached almost its maximum potient.. please someone explain to me how we still haven't gotten our cure? how we still havent been answer to how to at-least control this disorder if not cure it, how 50% of the doctors dont even know what hppd is.

 

I am just angry at the world and at doctors, and honestly speaking if I was a millionaire with the money to fund a research to find a cure for the disorder that I suffer from, and i wouldn't wish this disorder on my worst enemy.. how on earth haven't we reached somewhere in 50 years.. i refuse to believe this.

 

after 50 long years not a single doctor has found a way to control this disorder?? I can go on for days...... but i will leave at this is pure bullshit and im angry at the world.

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You need to let the anger go.... How many $billions and doctors work on cancer? Yet, there is still no cure... my wife's cousin will die before Christmas, leaving her husband and 1 year old child. Not every illness gets a magic pill.

Life is fücking cruel, but you simply can't let the anger get the better of you, especially a super rare illness like ours.

At the very least, use that anger to spread the message, to share our plight with as many doctors as possible like Hope1 is doing www.neurogroup.org

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I just got back from the gym, and I think thats my pre-work out getting my a little to angry, but im not letting the anger get to me.. i am happy with my life, and hopefully will continue to be. 

 

 

Life is cruel indeed.. but I wont and didnt let the anger get to me.. i just wanted to know how are stuck? This is not as serious as cancer.. Yes so much money goes into cancer, but it cant be cured.. has money went into HPPD? no.. and I dont think it will.. maybe my message was why arent we getting the awenress we need? because i honestly true think that if we reach enough people.. we can one day get the enough medical care, and possibly develop a control/cure for our disorder.

 

 

 

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thanks... I'm sorry if it felt like I was attacking or belittling your viewpoint... Of course, I wish more was being done for us too, but we are a very rare case that also has the stigma of "you used drugs, you took the risks, you live with the consequences"... It is not particularly fair, but that is how alot of doctors and potential backers will think.

 

We do have a core group here who are trying our best though.... Sending out emails and letters to various people that could help. Fingers crossed we will get a breakthrough one day. If you want to help out, we are on skype, i will pm you my username

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One of many issues surrounding HPPD that really bothers me is this supposition that it is rare.
What is truly rare is finding a doctor that knows what it is, who performs a bit of investigation and thinks outside the box so if there is a causality behind why HPPD is allegedly rare its becuase:

1. The stigma attached to drug users in that they deserve their fate.
2. Doctors just being apathtic and eager to rush us out the door with pills that will probably do more harm than good.

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As far as a cure is concerned, there is lots of headway being done in gene edititing and the regenerative medicine space but sadly NOBODY is applying any of this tech to our shared problem. My position on this is becuase people with HPPD in the past have concentrated on doing the science but didn't do much in the way of advocacy. There are already scientist who have done and still do research with limited funding so why public awareness campaigns were not part of the plan is a complete and utter mystery to me. It's like having two spheres of a working brain but only working with one. 

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