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(Philly.com)   Is that a potential cure for Duchenne Muscular Dystrophy in your pocket, or are you just happy to see me?   (philly.com) divider line 23
    More: Interesting, Cialis, muscular dystrophy, Duchenne, Viagra, MDA, lung function, clinical practice, muscle diseases  
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4076 clicks; posted to Main » on 08 May 2014 at 8:00 PM (14 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



23 Comments   (+0 »)
   
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2014-05-08 04:48:03 PM

As for side effects, "A few boys in our study had erections after taking these drugs," Victor noted. "The erections were not painful and not dangerous and resolved spontaneously without treatment."


"But I want treatment! Let me go see the school nurse for some... treatment!"
 
2014-05-08 08:04:43 PM
For some reason "Duchenne" brings up the word association of "douche."
 
2014-05-08 08:26:34 PM
I take care of a patient with Duchenne's. Trust me...you do NOT wish it on your worst enemy.
 
2014-05-08 08:35:20 PM
3.bp.blogspot.com
 
2014-05-08 08:37:41 PM
My kid will be returning as a counselor at the MDA camp for all. Her adorable little camper had this and only 8 years old. Here's hope this helps the lil guy. Dusty in here
 
2014-05-08 08:40:44 PM
P.s. article clearly says its NOT cure.

Subby's reading comprehension needs some work.
 
2014-05-08 08:41:32 PM

The Book Was Better: My kid will be returning as a counselor at the MDA camp for all. Her adorable little camper had this and only 8 years old. Here's hope this helps the lil guy. Dusty in here


There is hope. The patient i referenced is 31 years old.
 
2014-05-08 08:46:07 PM
Unfortunately, the young men will be condemned to wearing pleated Dockers when out in polite society.....
 
2014-05-08 09:00:04 PM

The more you eat the more you fart: I take care of a patient with Duchenne's. Trust me...you do NOT wish it on your worst enemy.


Very much this. One of my best friends suffered from it. She died in her late 40's from it. From 20 onwards, she was wearing leg braces and using crutches to walk until she couldn't walk any more. It's a horrible condition, ranking right up there with cancer.
 
2014-05-08 09:04:09 PM
The person i see is wheelchair bound, and at this point, only has a slight but of movement in his right thumb, and very limited ability to speak.

He cannot sit unsupported, nor can he move his head, etc.

He is on a ventilator.

I have noticed a marked decline in him over the last couple months, and unfortunately, I highly doubt he will see 32.
 
2014-05-08 09:17:55 PM
Great headline, subs.
 
2014-05-08 09:19:30 PM

The more you eat the more you fart: P.s. article clearly says its NOT cure.

Subby's reading comprehension needs some work.


Because the cure is eugenic.

I think everyone involved would be happy enough with a treatment that keeps boys out of wheel chairs and might get some others back on their feet.
 
2014-05-08 09:39:33 PM
My 4 brothers all died from Duchenne's. The only cure is death. A horrible, drawn out, excruciatingly slow death.
 
2014-05-08 09:49:44 PM
When I found out my husband had late-onset myotonic muscular dystrophy, I had a huge sad.

Then I found out about Duchenne, and thought him (and myself) intensely fortunate.
 
2014-05-08 10:05:16 PM
this is really good news.  As tfa said, there is no cure, but if this can be tested and lead to improved muscle tone for these guys that would be great.
See them all the time at work. It sucks.
 
2014-05-08 10:19:18 PM

Shirley Ujest: My 4 brothers all died from Duchenne's. The only cure is death. A horrible, drawn out, excruciatingly slow death.


This.
 
2014-05-08 10:54:18 PM

Billy Liar: Unfortunately, the young men will be condemned to wearing pleated Dockers when out in polite society.....


Are you kidding? This is the perfect opportunity to reintroduce the codpiece.

We'll get old smilin Bob from the Enzyte commercials to model them.
 
2014-05-08 10:58:51 PM

Shirley Ujest: My 4 brothers all died from Duchenne's. The only cure is death. A horrible, drawn out, excruciatingly slow death.


Shirley Ujest . If not, my heart can't quite stretch enough to imagine the pain of losing four brothers to this.
 
2014-05-08 11:45:13 PM
As for side effects, "A few boys in our study had erections after taking these drugs," Victor noted. "The erections were not painful and not dangerous and resolved spontaneously without treatment."

Boner-lulz aside, I think it's a bit of a stretch to call this a side effect. Show me a pill that can KEEP a pubescent boy from getting an erection at any given minute of the day, and I'll show you a goddamn miracle of modern pharmacology.
 
2014-05-09 12:09:23 AM
As an aside, when you see firefighters holding a boot out for donations at your local intersection, they are fundraising for MDA and it is very legitimate. Please help, as these diseases are not something you would wish on your worst enemy, as previously noted.
 
2014-05-09 01:10:37 AM
One of my close friends passed away from this.

I met him in college, or my first real job, can't remember.

I saw him go from crutches, to wheelchair, to groaning on the hospital bed clutching his chest where he passed a day or two later.

He had to have a pacemaker put in.

One of the nicest guys I've ever met.

Somehow he found a lady who wound up becoming his wife and gave him a daughter.

He was one of two brothers. His brother was the 'healthy one'. Then his brother started showing symptoms and passed away before my friend did.


I always warn people of the effects of steroid use, but can't help but wonder if that would help in such a situation.
At least bulk up and get an enlarged heart so you have more to waste away.
There was a guy, might even have been a doctor, who was using this approach to fight the dystrophying effects of AIDS. Had a blog he wrote in anonymously.

/haz sad
 
2014-05-09 09:11:57 AM

The more you eat the more you fart: The Book Was Better: My kid will be returning as a counselor at the MDA camp for all. Her adorable little camper had this and only 8 years old. Here's hope this helps the lil guy. Dusty in here

There is hope. The patient i referenced is 31 years old.


Well and he's young, the more time they can give him the more hope for a cure. Hope is a fragile thing but sometimes it's all you have.
 
2014-05-09 10:51:41 AM
My brother has this. I wish every day I could switch places with him. Anything that can give a glimmer of hope to improving him is incredible

He's almost 30 and finally had to have a ventilator put in. While he was in the hospital just about every nurse and doctor visited him. Not because his condition was that critical (it was very serious and required constant vigilance) but a 30 year old MD patient is very rare. Especially one that hadn't been in the hospital for over 10 years. And all of that was thanks to my parents who tirelessly provide the best care they possibly can. They are amazing people
 
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