Headline July 22, 2017/ ''' *PAIN.... \ PLURALS / ...PLUS* '''

''' *PAIN.... \ PLURALS / ...PLUS* '''

HE WIPES HIS TEARS AWAY   -and takes a very deep, deep breath.......... ''I hope that one day parents will be able to make a choice for their children who don't feel pain..............''

Living the rest of his life  incapacitated like that was too much for Chris to bear.   Eight years ago,   he hung himself     in the barn on their parents property. He was only 26.  ;;It was like losing............my life,'' Pete says.

Whichever company gets a  prescription drug to market first,    no progress would have been made without people like Costa and Pete, both of whom have taken part in studies for years.

Teacher Costa still remembers the day in 2011 when she first visited  Yale and met Professor   Waxman   in person, after corresponding with him by email and phone for years.

She got a tour of the labs, meeting more than a dozen scientists from around the world who have been working to fix Nav1.7. 

While walking through the lab, Costa the row of computers. Waxman asked, ''Do you want   to see what happens with your sodium channels?'' She did.

Waxman pulled up an image of a normal person's sodium channel on the screen, the strings of amino acids that form it neatly folded. 

Then he pulled up another image :    The protein here was    tangled clump. amino acids zigzagging almost off the screen. ''This is you,'' he said.

''I'll never forget,'' Costa says. Her entire life, she could only tell others how she felt   -she could never show them. 

To see the medical proof of her pain for the first time, Costa says, ''was the most validating experience in my entire life.'

'At the end of my visit to her home, Costa rushes outside barefoot to catch me before I leave.

 As she stands on the grass in the  60-degree weather,  her legs are already turning purplish with aggravation, and she pulls out a handwritten letter that she just found, from her cousin  Helaine, who sent it in 1986.

Helaine lived in  Alabama  and  also had  eythromelalgia. She was one of Costa's favorite cousins. They looked alike.

Helaine was divorced, living in a trailer. She never had  access to the kind of medical treatment that Costa has received. 

When Costa and her cousin talked,  it was often about their mutual state of hurt.     In  2005 , Helaine died.   Costa doesn't know how. exactly.  She just knows her cousin never woke up.

Today when Costa resurrects memories of her own pain, they come with specific details and anecdotes   -like that terrible day on the delayed plane, with  Smartwater bottles, or dunking her feet in gutter water as a child.

Neurologists believe that,  in the brain, pain is associated with memory-making processes, which explain the specificity of her stories.

You don't remember every time you've gone running, but you remember the day you slipped on ice and broke your knee.  

Pain also leaves an imprint on your cellular memory   -the experience our bodies hold on to and may pass on to our children and grandchildren-

Which some scientists believe may one day help explain why chronic pain can persist even after an injury has healed. 

We live with the echo of pain inside us, constantly reminding us to watch our step, back away from the stove,  slow down. Some one could get hurt.

For Pete, recalling details of his injuries does not come easily, and his memories of growing up with his younger brother, Chris could help refresh his memory.

''I relied on my brother a lot for retelling my stories and holding on to my memories,'' Pete says, breaking down into tears. 

A lifetime of injuries caused so much damage to Chris' body that doctor told him he would likely end up in a wheelchair before he turned 30. Living the rest of his life incapacitated like that was too much for Chris to bear.

Eight years ago, he hung himself in the barn on their parents ' property. He was only 26. ''It felt like losing.........my life.'' Pete says..  

He wipes his tears away and taken a deep breath. ''I hope that one day parents will be able to make a choice for their children who don't feel pain, to activate that sodium channel so that their children can live a normal life.''

The work underway to the  Nav1.7 channel won't help  Pete or others with congenital insensitivity  to pain   -there's no point blocking a portal that's permanently closed.

Instead,  the condition remains the most frustrating of  mysteries : one with a known cause but no cure, passed down from one generation to the next.

When his daughter was born in 2008, Pete asked the doctor in the delivery room, ''Does she feel pain?''

''They picked her.'' his wife remembers. ''And she cried.    ''It felt something like relief.

With respectful dedication  to all the    Sufferers,     Research Scientists, Students, Professors and Teachers of the World.     And with deep appreciations for Eriks Hayasaki,    for this  brilliant research...........

See Ya all on !WOW!   -the World Students Society and Twitter-!E-WOW!  -the Ecosystem 2011:

''' Dark Arts '''

Good Night and God Bless

SAM Daily Times - the Voice of the Voiceless


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