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Author Topic: Tissue Engineering  (Read 53914 times)

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popopo

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Re: Tissue Engineering
« Reply #100 on: November 04, 2016, 05:42:04 PM »

You might want to contact dr.Atala and his team too. I have a mailadress so anyone who wants to at least give them a heads up that we are here waiting for developments PM me.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

AphexTwin

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Re: Tissue Engineering
« Reply #101 on: January 12, 2017, 09:15:22 PM »

No success on getting hold of dr atala?  I havent emailed him yet, im just assuming trials have not started? Dont know how much patience i have either, im severely depressed.
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AlexSamo

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Re: Tissue Engineering
« Reply #102 on: February 02, 2017, 11:27:36 AM »

Nobody still haven't contacted with Dr. Atala or Dr. Yoo?
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rellisacct

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Re: Tissue Engineering
« Reply #103 on: March 02, 2017, 03:16:13 PM »

I went and saw the doctor who works under Dr Atala about 3 weeks ago and they are waiting for FDA approval to go ahead with trials. It's only available to military, but trials should be starting by summer-fall. Urethra trials have been given clearance though.

The most painful thing is knowing that the technology exists to cure all of us but our government is too corrupt to let things happen. Read Dr. Robert Becker's book called "The Body Electric". If I knew anything about Electromagnetism I would have tried his experiment.
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popopo

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Re: Tissue Engineering
« Reply #104 on: March 03, 2017, 02:31:41 AM »

That sounds like a good development.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

AlexSamo

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Re: Tissue Engineering
« Reply #105 on: March 05, 2017, 09:06:45 AM »

[Full quote removed]

What else do you know about laboratory-grown penises human trials in Wake Forest? Maybe you've seen this pic?

http://i11.pixs.ru/storage/0/6/8/KopiyaScre_9335718_23419068.png

In this screenshot you can see that Terri Bowen (secretary of Dr. Atala) said that they are confident they will start human trials in mid-late 2016 (this screenshot pic was made in July 2015), but now is March 2017, and they're still not started trials, so what is a main problem? Is it because FDA still not approve trials or what?

Also, maybe this doc with whom you spoke, has said something about how many time may take human trials? I mean, is it possible, to see this technology in widespread clinical practice, say, in next 5 or 10 years?

Thanks.
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popopo

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Re: Tissue Engineering
« Reply #106 on: March 05, 2017, 10:28:44 AM »

The problem is the FDA. It's not that Atala isnt doing his job, it's just a loooooooonnnng proces for the fda to approve anything. Same goes for a substance called androxal that could be an absolute game changer in testosterone replacement theraphy. HECK, the substance is already an ingredient in a pill called clomiphene so it is easy as cake to make it, but the FDA doesn't care. It's all about money and adrogel is expensive so why change a winning team?
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

popopo

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Re: Tissue Engineering
« Reply #107 on: March 05, 2017, 10:30:01 AM »

Sorryfor being off topic, just making a point and making clear it's not the doctors fault, it's the system that's not working well.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

rellisacct

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Re: Tissue Engineering
« Reply #108 on: March 10, 2017, 04:05:34 PM »

AlexSamo - That is a very interesting pic and is exactly what I was told in 2015 from this same doctor. Just a few weeks ago he basically flat out said that the technology is there and they have had GREAT results in animals as well as regrowing human penises, however, it is strictly in the hands of the FDA to go ahead with approvals. The whole project that they are working on now is called "AFIRM", which means it is only for the military right now. When will it become widespread in clinics? I have no clue. I would hope that it would not take another 10 years to get to us, but it is really up to the FDA and how well the human trials go.

Popopo - Absolutely agree...I wish they could do these trials somewhere in Europe or something, but it's our government that's funding this so it has to be done here.



 
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Brunobald

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Re: Tissue Engineering
« Reply #109 on: March 21, 2017, 04:53:55 AM »

Thinking about this method more. Would it not come with the same problems as standard graft operations for example Erectile Dysfunction?

Also for those worrying about slow progress try to console yourself with the fact that there are multiple emerging technology that will work together to bring this new procedure to reality and that the basic tech will transfer from one body part to another. Flat material like skin or tunica are the easiest.

I do not under stand how this doctor can say he is growing a full penis as this would involve the prinintg or growing of veins which is a piece of the puzzle which is far from solved??

Examples of technology you can research that I think might speed things up are. Machine learning and genetic editing for example the discovery of crispr.
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AlexSamo

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Re: Tissue Engineering
« Reply #110 on: March 21, 2017, 04:38:55 PM »

@rellisacct

Please, delete some messages from your PM box, I can't sent you PM
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lessor

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Re: Tissue Engineering
« Reply #111 on: March 22, 2017, 05:03:31 AM »

This post was opened in 2010, we are now almost in april of 2017 and everything remains the same, then when we are in 2020 or 2027 Will anything have changed? wth!

I am very tired of people who give false hopes
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popopo

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Re: Tissue Engineering
« Reply #112 on: March 22, 2017, 07:49:52 AM »

Me too, and I feel so powerless because of it, but what can we do? The only way would be to go into politics or become a doctor yourself and change the rules. What can we do? The only thing I'm doing well is going from doctor to doctor complaining about this crap and telling them to [email protected]< off with "psychological help" that doesn't really help. People do not understand how something like this takes away the will to live. Most healthy men are just not "wired" to never have satisfying sex and no matter what you do this will haunt you for the rest of your life. I can trick myself into thinking I'm happy by being active, but everything lost meaning. I wanna be heard. I want us all to speak out and make sure we're heard by the others who don't even think about these things right now. But even THAT isn't true. ALL men know these insecurities and most non-expert people I spoke to understand the pain we're dealing with. The only one's who don't are left winged feminists who think having a dick is just "macho BS" anyway. you got hands and a mouth, right? But whatever the future might bring and no matter how long I'll be able to fight the suicidal thought, I will NOT go unnoticed. If I ever give into these thoughts I'll make sure it's not for nothing and I hope to raise awareness for this issue. Now people might "laugh" at issues like this, but I'll make F^@$!ng sure people will feel my pain. OUR pain.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

james1947

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Re: Tissue Engineering
« Reply #113 on: March 22, 2017, 08:04:52 AM »

lessor

I am not answering to your question because If I, many members will blame me for discouraging forum members. :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

popopo

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Re: Tissue Engineering
« Reply #114 on: March 22, 2017, 01:48:21 PM »

You can just tell the truth James, I think most people can handle the truth and no hope is better than false hope in my opinion anyway.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

lessor

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Re: Tissue Engineering
« Reply #115 on: March 22, 2017, 02:18:17 PM »

Totally agree with you mr popopo, You've read my mind
Im very tired about the doctors, seriously i dont know why I keep seeing doctors, they dont have solutions, apart from those that we all already know and that in many cases do not serve..

And many people, many women, will say you have mouth, you have legs, you are live but for me the life right now is empty, no have any sense. I dont want to be all my life working, alone , seeing other men enjoying of the life with her wife, or with others girls, while I m feeling like a crap every time I see that and i cant avoid feel like a crap.

I cant be with the people because when they talk about woman, sex my sensation will be horrible, and i dont want feel so
And then you read something like this, a thread of 2010 which gave hope to the people about a cure which would arrive in a short-medium term, and now you realize is 2017! and this treatment hasnt been tried in any person since so, People can not even test it to see if it works or not, is that there isnt even that possibility after 7 years.

WTF and I will say more i hate the actual situation with the medicine, when a woman has a breast cancer or a woman want to be a man the doctors will  do everything possible to help them, support them from all walks of society, from the media, will make many campaigns to support them, for the transsexuals will build a new penis that will cover insurance, BUT if a man has a real problem with the penis Oh friend in that case the society will tell you How can you be depressed by that, you're still alive! but with the others examples dont tell the same. In a particular case, the doctors specialized in veins know all about the veins of the body, veins in legs, veins in arm, veins in vagina but OH WAIT they dont know about the veins in the penis and  havent interest in knowing F***. The doctors they do not take this problem seriously, most of them have no interest in researching about it, and this is the guilt of the current society and I no longer say since the viagra or cialis appeared the urologist think that prescribing that they do not have to do anything else , No longer investigate, They will always say take a pill, if it does not work they say take an injection, but I have peroyne / venous leak, that is not a solution, and in many cases it does not help and can make things worse

In conclussion i feel impotent, f'^+'ing impotent that is the word

Sorry for this post i express all my crap here LOL
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Brunobald

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Re: Tissue Engineering
« Reply #116 on: March 22, 2017, 02:42:52 PM »

Lots of negative posts but I do not agree that nothing has changed since 2010. Any of these advanced technique like regrowing organs is not specific to peyronies. Organ regeneration is a broad subject and the field is making progress everyday.

Some of the biggest advances in the field since 2010 are the following.

Discovery of crispr cas9, I think its a protein (google crispr for more info there is some great YouTube videos) that can edit any genome with relative ease. It's important as it allows rapid and accurate changes to our dna. It can be used as a tool to grow peyronies scars in a petrie dish for example the scar could be used to test and discover new drugs. It has also been used to remove the genes in pigs that cause our bodies to reject their doner tissue.

Printing DNA, this one is pretty cool. It is now possible to print dna using a computer and special equipment. In combination with crispr it is now possible to print dna and then copy and paste that DNA sequence into almost any living organism. The possibilities are endless, there are research groups right now trying to make the first 100% synthetic yeast cell which is mind blowing. We are moving into the age we we cab actually code for life.

This lead me on to machine learning. It's prob best to search YouTube for this one as well as its a big complex subject. Machine learning cab be used to try and decide our genome. If we can find out what sequence of genetic code, codes for peyroines we can use crispr to deliver a genetic edit to the tissue effected by peyronies. This is the basis of gene therapy. The crispr gene changer would be delivered by a synthetic virus. Gene therapy could be a 100% cure for peyronies progression but not a physical fix.

This is not science fiction, all three are receiving massive investment.

I would guess a decent cure for peyroines is about 10 years away.

We might get better fixes along the way. Possibly a better way to dissolve the scar tissue.
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lessor

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Re: Tissue Engineering
« Reply #117 on: March 22, 2017, 02:52:25 PM »

I would guess in 10 years i will write in this board the same again
But hey i could be in a wrong  Just my two cents
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james1947

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Re: Tissue Engineering
« Reply #118 on: March 22, 2017, 05:20:07 PM »

Lessor
Quote
I have peroyne / venous leak, that is not a solution
My problem same as yours. VED, Pentox, low dose Cialis helped me to some extent, Viagra helping me for intercourse, not much strong an for not long time.
We have two solutions:
* Veins surgery, very complicated, very few specialist surgeons, low rate of success
* Implant, not so complicated, many good surgeons, high rate of success
Did you ever check out FT? Serious website, a lot of information about implants

Brunobald
I agree with you about the researches but non of them Peyronies/Erectile Dysfunction oriented
Regarding:
Quote
I would guess a decent cure for peyroines is about 10 years away
I know will be some members that don't like my answer, but:
I was given shorter time 9 years ago, less than 5 years
So now, my previous 9 + 10 yours it gives 19 for me. And the 10 years is just a wild guess :)

Solutions have if nothing else helps, see my two lines above with *
If you will ask why I didn't make an implant yet, I have no insurance and have more important targets right now for my finances as I am 69 and my daughter 7 :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

lessor

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Re: Tissue Engineering
« Reply #119 on: March 22, 2017, 05:58:11 PM »

Quote deleted by moderator. Please read the forum rules regarding quotes
Yes i check FT  many times
I am thinking about the implant seriously, but first I will try something like embolization or ligation possibly, if it doesnt work(the most probably really) i would go for the implant

James if you go for the implant and you can go to the USA Dr Eid have a guarantee for 10 years for his work in the implant, maybe you already know this
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james1947

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Re: Tissue Engineering
« Reply #120 on: March 23, 2017, 02:52:34 AM »

Lessor

I didn't know about Dr Eid insurance, but in my priority list I have two doctors that will be before him :)
Anyhow, he will be the third I suppose.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

lessor

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Re: Tissue Engineering
« Reply #121 on: March 23, 2017, 03:12:50 AM »

But I mean Dr Eid guarantees if your implant fails in the next ten years to the operation, the replacement for the doctor will be free, the work of the doctor will be free, and as the implant is cover for the whole life time for AMS or Titan, the unique cost in the replacement would be the cost of anesthesia.

I say this because i havent seen any other doctor who guarantees this. It is interesting
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Brunobald

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Re: Tissue Engineering
« Reply #122 on: March 23, 2017, 03:18:48 AM »

Actually the implant is a decent working solution. I would maybe go with the implant over a lab grown penis. It has a track record of success. The idea of an implant horrified me a first but now if my peyronies progressed I would almost feel relieved to have such a device and be somewhat cleared of the mental worry of peyronies progression.

Also in response to the comments that people have been told we are ten years away in 2007 and still nothing, I agree progress has been slow. Let's hope things will change, I truly believe we have new tools now that actually give is a shot at a better solution.

I also believe that young peyronies sufferes have it the worst and we are the smallest group. In the grand scheme of things peyronies is not a big problem to the research and medical world. Let's hope that some big research group makes some strides in their work that can migrate to fight our disease.
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popopo

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Re: Tissue Engineering
« Reply #123 on: March 23, 2017, 07:26:31 AM »

Let me just add one positive thing about the way society is changing. In my honest opinion I really see people change. I feel like society is more superficial and even a little more individualistic and cold. Maybe that's not a good thing, BUT I also feel more people are insecure and open about their insecurities. If I say "I feel like crap because I'm an almost impotent 22 year old, people genuinly feel bad, especially young folks." If I did the same a 100 years ago people would probably wash my mouth wit soap and tell me to shut up. xD my point is that because of porn, the media, etc etc it's less of a taboo to talk about these issues, and I'm sure at some point men (even healthy ones) will not settle for having just some dick and want to be able to choose for something else like women can with breasts or lips or vaginal lips and what not. And the acceptance of homsexuality is good too! Not trying to stereotype, but be real.. the is no other group that fetisjises penises more than gay men. I can't imagine that no man will even be able to enlarge his penis even though deep down ALL men want to be at least "above average" if he's being true to himself.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

james1947

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Re: Tissue Engineering
« Reply #124 on: March 23, 2017, 07:37:04 AM »

I may change Dr. Eid to be the number 1  :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

KoffeeKup

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Re: Tissue Engineering
« Reply #125 on: March 25, 2017, 05:51:23 PM »

Guys I know the future looks bleak. But we can't stop fighting. The FDA is a big pile of crap, I know, but there is a good damn reason why. Here is a good example. Back in the day they believed radiation could cure all sorts of aliments. There was a common believe that radiation could reverse aging, cure wrinkles and rejuvenate skin.

A clinic opened up and promoted miraculous skin treatments involving X-Rays, newly discovered at the time. Dozens of women paid good money to turn back the clock and look younger, more beautiful, remove hair and erase their blemishes. They would put these women in a room and blast them with high intensity X-ray radiation.

I'm sure you can imagine the effects of radiation bathing a persons skin. If any of you have played Fallout, can you say Hiroshima Maiden syndrome boys and ghouls?

So while yes, the FDA may be corrupt and has people working for their own interests, but they also don't want people selling bogus treatments and quick fixes for things and causing more health issues. And I am sure many of you have had a run in at least once in your life with a snake oil sales man.
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AlexSamo

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Re: Tissue Engineering
« Reply #126 on: April 20, 2017, 10:20:43 AM »

Hey rellisacct, please delete some messages from your PM box, I have a few questions for you.
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AphexTwin

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Re: Tissue Engineering
« Reply #127 on: June 16, 2017, 07:06:17 PM »

Ten years for any kind of hope? Ive already had this disease for 17 years and im only 30. This issue needs to be taken seriously, people are commiting suicide over it. What kind of quality  of life will a man have if he cant have sex. 
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AphexTwin

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Re: Tissue Engineering
« Reply #128 on: June 16, 2017, 07:12:22 PM »

If a woman can completely have her uterus and vagina replaced, why isnt it an option for men yet?

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james1947

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Re: Tissue Engineering
« Reply #129 on: June 20, 2017, 10:27:56 PM »

Quote
This issue needs to be taken seriously, people are commiting suicide over it
You are right, but I suppose the researchers/doctors don't think will be big money from it :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

AphexTwin

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Re: Tissue Engineering
« Reply #130 on: June 26, 2017, 11:25:19 PM »

[Full quote removed - Use 'Reply' instead of 'Quote']

That is truly disgusting , we are dealing with human lives here. Do it out of the goodness of your heart , not for your bank account. A sad world we live in.
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AphexTwin

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Re: Tissue Engineering
« Reply #131 on: June 26, 2017, 11:29:43 PM »

[Full quote removed - Use 'Reply' instead of 'Quote']

Tbh, i would pay millions for a cure  if i had that kind of money. Money means absolutely nothing with no peace of mind. Quality of life over money ANYDAY.
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popopo

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Re: Tissue Engineering
« Reply #132 on: June 27, 2017, 08:00:28 AM »

I'm sure others feel the same way aphextwin. I dont think doctors purposely NOT find a cure, it's probably just way harder (no pun intended)  than we think. You, me and thousands of other men are willing to pay for ways to improve size and function of the penis, aphextwin. Even just for vanity men would be willing to pay with or without peyronies. The lack of demand or money to be made clearly isnt the issue, it just doest exist now and hopefully that will change.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

popopo

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Re: Tissue Engineering
« Reply #133 on: June 27, 2017, 08:07:37 AM »

On the other hand.. there is still a stigma around the issue and that really frustrates th progression. I keep going to doctors and I hope you all do the same. Yeah yeah, it sucks hqvig to admit you have an issue, but in my opinion it's worse to keep it secret and keep your "pride" and aft like nothing is wrong, than openly admit this to a doctor. I mean when I say that part of the problem are the men that are too "proud" to get help. I wouldnt be surprised if like 50% of men with peyronies never ever even sees a urologist for it.

Then again, I did go to a urologist and many others as well and those that do arent getting th help they need either. It's still easier and a stupid "trend" to always seek th answer in "cognitive behaviour theraphy, mindfullness and other psychological help". I just hope some day the docs can actually help us instead of just tryig to make us feel better about the situation.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

AlexSamo

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Re: Tissue Engineering
« Reply #134 on: July 04, 2017, 01:06:49 PM »

Just a few weeks ago he basically flat out said that the technology is there and they have had GREAT results in animals as well as regrowing human penises, however, it is strictly in the hands of the FDA to go ahead with approvals.
Rellisacct, if you read this post, please delete some of messages from your PM box, because it's full. I'll be waiting your reply. Thanks.
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popopo

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Re: Tissue Engineering
« Reply #135 on: July 04, 2017, 02:10:30 PM »

Whatever you guys know about this, please keep me informed I'd be glad to hear all about it.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

AphexTwin

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Re: Tissue Engineering
« Reply #136 on: July 15, 2017, 07:29:07 PM »

So you can delete the quote yourself, don't wait for moderator :)
They did the exact same thing when i got the nesbit plication surgery at mayo clinic, i really regret having surgery. I went back about a year later to tell them things were still wrong, and they gave me a referal to a psychologist, how rude. Im not crazy, i know i have a problem. I have a hard chord in my penis even when im soft . It drives absolutely nuts because it shrivels up and feels light. Im praying they come up with a successful tissue regeneration, because im losing the will to live. I have gone with this disorder long enough, im tired of fighting. Im tired of it all, i want my life back.
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AphexTwin

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Re: Tissue Engineering
« Reply #137 on: July 15, 2017, 07:32:27 PM »

Opps i hit quote instead of reply again
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Jack1909

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Re: Tissue Engineering
« Reply #138 on: July 16, 2017, 01:33:58 AM »

Aphex I feel fo you. It's happened the same to me and I was "suggested" to take care of the psychological component of that. That's ridiculous. Unfortunately it looks like there is still poor awareness around how dangerous and invasive straightening surgeries are. I think all the concept behind them is wrong..let's hope medicine will step forward soon.
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kuaka

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Re: Tissue Engineering
« Reply #139 on: September 11, 2017, 10:34:19 AM »

There is definitely a psychological component to dealing with persistent pain of any severity, but a Dr. who suggests that as the ONLY course of action is not doing his job.
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lessor

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Re: Tissue Engineering
« Reply #140 on: September 11, 2017, 10:50:56 AM »

If a woman can completely have her uterus and vagina replaced, why isnt it an option for men yet?
Because the society despises our problem, because society is deeply feminist (at least in Europe) because if you are a man the stupid doctors will tell you to live with it, love and anothers BS, because women will often say it is just a penis, (but in the background they will never be with an man so and being with a woman does not make sense unless you want to commit suicide) In short because society is hypocritical
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james1947

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Re: Tissue Engineering
« Reply #141 on: September 14, 2017, 11:58:59 AM »

Quote
...because society is deeply feminist...In short because society is hypocritical
Good said lessor!!! I am with you 100% ;D But of course, people will say that I am an old chauvinist, racist, etc' etc'. They may be right, I am really old, relatively, at almost 70 8)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

lessor

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Re: Tissue Engineering
« Reply #142 on: September 14, 2017, 06:33:12 PM »

I am with you 100% ;D But of course, people will say that I am an old chauvinist, racist, etc' etc'.
I do not care what people say anymore, and you probably do not care what people can say.
Everything is too correct in society. If you tell the truth, if you do not act politically correct you are a bad person, a racist, chauvinist and more crap .. I do not care anymore what they think, my life is over or near so I will tell things as they are
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AlexSamo

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Re: Tissue Engineering
« Reply #143 on: October 01, 2017, 02:05:21 PM »

Any news&updates for tissue engineering clinical trials?

P.S. Rellisacct, if you read this post, please delete some of messages from your PM box, because it's full. Or PM me. I'll be waiting your reply. Thanks.
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Werther

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Re: Tissue Engineering
« Reply #144 on: January 17, 2018, 01:14:20 PM »

Hey guys, I've been a lurker on this forum for a long time and I have finally decided to register to post on this subject.

I've been following every kind of news and updates about Atala's work on penile tissue engineering ever since I came to know about it and I read here that some users contacted WFIRM asking them when they intended to begin with clinical trials on humans. It appears that they should have begun recruiting people last year's fall (I assume this by user treeza1's words in this thread: Anythig new? - Peyronies Society Forums). However no update was reported.

So I've decided to write to WFIRM via e-mail by myself and this is the response that I've received:

"Good afternoon,


I was forwarded your e-mail inquiry.

 

We do have a research study that is about to begin for engineered corporal tissue to treat peyronie’s disease.  The goal will be to correct curvature but we can’t guarantee that it will or that it will correct Erectile Dysfunction.

 

If you are interested in being evaluated by Dr. Ryan Terlecki at Wake Forest Baptist Health Urology, please call 1-888-716-9253 to make an appointment.

 

Thank you for contacting us
".

I answered them back, asking for more details, regarding the precise day of the study's beginning and its duration, also adding that I can't be personally evaluated by them right now, since I don't live in the USA. Unfortunately, they didn't reply.

So now I am writing on this forum to know if anybody here have actually been personally to WFIRM in order to get evaluated to find out if they're eligible or not for this kind of surgery; if that's not the case, could anyobody here (US resident) go personally to the Institute and report back on what's actually happening with this study? I'd go by myself, but, as I've mentioned before, it's not possible for geographical reasons.

I'd be very glad if all of us could know something more on a treatment that could potentially be the cure for our damned disease.

Thank you all for your attention and sorry for any misspell, but english in not my motherlanguage.
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TonySa

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Re: Tissue Engineering
« Reply #145 on: January 17, 2018, 03:54:57 PM »

Do you have their website or know where they are located?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

Werther

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Re: Tissue Engineering
« Reply #146 on: January 17, 2018, 05:40:06 PM »

Their website's link is Wake Forest Institute for Regenerative Medicine (WFIRM) - Wake Forest School of Medicine

Here's the link to the study: Engineered Penile Erectile Tissue - Urology Research - Wake Forest School of Medicine and then an older one, again on their website: Lab-grown Replacement of Penile Erectile Tissue In Animals

They are located in Winston-Salem, North Carolina. Are you willing to reach out to them?

It seems to me that this Dr. Ryan Terlecki, who was mentioned in the e-mail they sent to me, is going to be the urologist that will perform these surgeries; in fact Peyronie's disease and erectile dysfunction are his clinical interests, based on the description of his profile in WFIRM's website (Ryan Terlecki, MD, Urology - Wake Forest Baptist, North Carolina). Maybe someone could get an appointment with him and report to the forum what he will say about this study?
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Jack1909

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Re: Tissue Engineering
« Reply #147 on: January 19, 2018, 06:41:16 AM »

I think I’ll be there in a couple of months. Don’t feel like doing btw flying around the world due to health reasons is a nightmare.
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Werther

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Re: Tissue Engineering
« Reply #148 on: January 19, 2018, 11:11:14 AM »

Thank you so much Jack! Keep us updated!
I too think it's a shame that somebody is forced to travel to the other side of the world just to get infos and maybe discover that the study won't even start anytime soon or there's no eligibility for tissue replacement in that specific case.

Isn't there an advocacy group on this forum? It would take literally nothing for a US resident (even better if North Carolina's resident) to go there, maybe on behalf of the whole PDS, and get things clear with regards to the beginning of these trials, their duration and the parameters of eligibility and exclusion for this kind of surgery.

The fact that we still know nothing is beyond ridicolous, considering that Atala's work's main aim is to recreate an entire penis but, as declared by himself, in order to reach this goal first they'll have to begin with partial replacement; and guess what? only people with scar tissue in the penis (tunica albuginea and/or corpora cavernosa) need partial replacement and here we are. If we're not going to urge them to - at least - declare what they intend to do, nobody else will do it for us.

The absence of activism is killing the possibility of getting what could be a real and effective therapeutic option and - I bet - an alternative to prosthesis.
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AlexSamo

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Re: Tissue Engineering
« Reply #149 on: January 19, 2018, 01:41:21 PM »

Werther,

Thank you so much for information. User "rellisacct" (link: http://www.peyroniesforum.net/index.php?action=profile;u=6718 ) living in North Caroline, but he was not active on this site since March 20, 2017.

As for clinical trials at Wake Forest, regarding penile tissues, I've found only one at this moment, here it is: https://clinicaltrials.gov/ct2/show/NCT03240822
But I think it's not that we need, it's a trial for full penile transplantation, not partical and nor regarding tissue engineering.

In article by october 2014 (link: https://www.theguardian.com/education/2014/oct/04/penis-transplants-anthony-atala-interview ) Dr. Atala have said that they hoping it will be available in next 5 years i.e. in 2019, but what does he mean saying this? It's seems like he talked about approval this technology by US FDA and first human trials in 2019, not about use this technology in widespread clinical practice in the next 5 years for all patients who need that.

I'm also have a question and would appreciate if someone will explain just one thing. Atala and his team started this project in 1992 (more than 25 years ago), in 2002 they've performed first succesfull animal trials, then another successful animal trials in 2008 (it's already was 10 years ago), but this technology still not tested on humans! Isn't it sounds a bit suspicious? We talking about timelines literally of 25 years, but we still haven't this technology on medical market. So why this is taking so long? Why even after 10 years after second successful animal trials, human trials still not even started? Moreover, still not clear when they will starts.
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