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Selasa, 25 April 2017

Time To Bring Style To Neuropathy Accessories


Today's post from mashable.com (see link below) talks about something that should have been thought about long before now and really reinforces the fact that people who need walking aids are supplied the bog-standard canes etc without any thought as to how they look. Hopefully, this lady's campaign is a huge success and leads to 'style' being brought into all aspects of medical accessories. It's bad enough having to use a walking stick to help neuropathy patients get through their day without them being so ugly and basic that they just reinforce someone's disability. Great idea - now bring on the finance and the backers!!
 

Disabled woman petitions J.Crew to design stylish canes
By Hayley Wilbur5 days ago

Liz Jackson, a 33-year-old woman diagnosed with idiopathic neuropathy in 2012, has been petitioning J.Crew to sell walking canes.

Jackson originally started a blog, The Girl With the Purple Cane, about her life in order to keep in touch with friends and family. She quickly became an advocate for disabled people.

See also: Paralyzed designer creates jeans for women in wheelchairs

“Idiopathic means without known cause, and Neuropathy describes the weakness I experience in my extremities, my eyes and throughout my body,” Jackson explains to Mashable. “My body acts in many ways like a body that has Multiple Sclerosis, the only difference is that my immune system attacks my peripheral nerves instead of my brain and spine.”

Image: Liz Jackson

Jackson didn’t want to let her disease stifle her fashion. She noticed that the her cane was the only part of her outfit that didn’t fit.

“I am drawn to thoughtful, creative and approachable products,” she says. “The cane I got in the hospital was none of these things. When you wake up to a new body, you go through a process where you adapt, you try to pick up the pieces. And it was so odd, I looked like myself in every way, but when I would walk, it looked funny. And my cane did not match my insides or the outsides I had so carefully constructed.”

Image: Liz Jackson

One particular shopping experience led Jackson to specifically begin asking J.Crew to make canes. She didn't understand why the brand made fashionable eyeglasses but not other assistive devices.

“I then was looking at a display of their women’s t-shirts and I realized how perfectly my purple cane fit among this colorful display. And it struck me, wouldn’t it be amazing if J. Crew made a seasonal cane?,” she says.

 

The petition currently has over 2,000 supporters and Jackson has received varied responses from the clothing brand. In February, the company told the New Yorker that they respected what she was doing. She then a phone conversation with the company where she received the response “not right now.”

“Lack of choice only disables us further.

Why should the person with the impairment have to look harder? Search farther? Adapt? Why should the person with the impairment have to look harder? Search farther? Adapt? Shouldn’t it be the other way around?,” she asks.

Jackson has found alternatives to the typical medical cane that she got at the hospital — enter the name of her blog “The Girl With The Purple Cane.” When Jackson first saw a Sabi purple cane, she had to have it.

“Nobody could have guessed how that simple cane impacted the trajectory of my life,” she says. “Instead of getting asked 'what’s wrong' I started to get complimented ‘nice cane’. Children wanted to play with it. Adults remembered me by it. It became a source of pride. It helped me craft a new and empowered identity.”

Her other cane was created by Top & Derby, a company that strives to makes customizable versions.

Image: Liz Jackson

Because of a lack of communication, Jackson has started to move on from J. Crew and onto other companies that have previous experience with disability outreach. She recently wrote a public letter to her old boss Ellen DeGeneres (she was one of her production assistants) to ask for help creating inclusive fashion, starting with her ED by Ellen brand.

Jackson isn't the only advocate for disability-friendly fashion. Clothing brand Alter Ur Ego, which makes jeans for people who use wheelchairs, recently reached its goal of $20,000 on Kickstarter.

Jackson hopes to see other brands making canes but also inclusive pieces such as adaptable garments, assistive tech and mobility devices.

“Society has long been taught to look away. Don’t stare, it’s rude. But times have changed. People with disabilities are now asking to be seen. And it’s only a matter of time before we become marketable consumers.”

http://mashable.com/2015/08/26/jcrew-petition-inclusive-fashion/

Senin, 10 Oktober 2016

Bring it on! We need to interrupt the morphine spiral!


Powerful New Painkiller With No Apparent Side Effects or Addictive Qualities, May Be Ready in a Year
ScienceDaily (Jan. 30, 2011) — A powerful new painkiller, which was developed on the basis of the research conducted at Stony Brook University and with no apparent side effects or addictive qualities, may now be only a year or two from the consumer market.


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"This offers a major paradigm shift in the control of pain," declares Dr. Simon Halegoua, Professor of Neurobiology & Behavior at Stony Brook who in the 1990s, teamed up with fellow Stony Brook professors Dr. Gail Mandel and Dr. Paul Brehm to identify a novel sodium ion channel involved in the transmission of pain. They predicted that a drug aimed at blocking this channel, PN1/Nav 1.7, would control pain. PN1 (Peripheral Neuron 1), is uniquely expressed in peripheral nerves such as those involved in pain transduction.

"When a patient is given an opiate like morphine, pain signals are still transmitted from sensory nerves to the central nervous system. Morphine action throughout the brain reduces and alters pain perception, but it also impairs judgement and results in drug dependence," explains Halegoua, also director of the Center for Nervous System Disorders at Stony Brook University. "With drugs targeting the PN1/Nav1.7 sodium ion channel, the pain signals would not be transmitted, even by the sensory nerves. And since the central nervous system is taken out of the equation, there would be no side effects and no addictive qualities."

The potential for such drugs is enormous -- the reduction or elimination of pain for patients with cancer, arthritis, migraine headaches, muscle pain, pain from burns, and pain from other debilitating diseases.

He notes that drugs in both oral and topical ointment forms, based on the research he conducted in a basement laboratory at Stony Brook with Mandel, a molecular biologist, and Brehm, an electrophysiologist, are currently in Phase II clinical trials in England and Canada.

The Research Foundation of the State University of New York is the holder of the various patents originating from the work of the Stony Brook researchers. Icagen Inc., now in partnership with Pfizer, holds the exclusive license to these patents and has announced their own drug has now entered Phase I clinical trials in the U.S.
Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Stony Brook University.

Kamis, 29 September 2016

Neuropathy Can Bring You To The Edge


Today's post from myneuropathybattle.wordpress.com (see link below) is an honest personal account of how neuropathy can be so severe that at times, it can make you want to give up the fight. Many people will be able to identify with this person's feelings and hopefully be discouraged from such thoughts by this lady's reasoning and solution. Hearing how other people are dealing with neuropathy can be invaluable in that you discover you're not alone and can share and even learn from, other people's experiences.


My Neuropathy Battle:
Suicide Isn’t Painless
Feb24 ARCHIVE | FEBRUARY 2013

When I was in my early twenties I used to think about it all of the time. Life wasn’t going well for me at the back then. I had to give up work to have surgery, I was in a lot of pain; the days seemed endless and pointless.

I’ve heard it said many times that suicide is the easy way out, however, there isn’t anything easy about being in such a dark place and living a life so drained of anything good that suicide seemed the only option ,and I know from own experience that suicide is not painless for those left behind.

At my lowest ebb I was on strong painkillers, not strong enough, obviously, as I was in constant pain and couldn’t see past the pain. I came as close as counting out pills and I would’ve taken them but one thing stopped me: while I could have quite happily have done that to myself, I could not do that to anyone else.

It would have been the people I love the most who would’ve been left to carry what I had done around with them for the rest of lives and as difficult as my life was as the time, that thought was enough to stop me.

Years on, I can safely say I am not in good place. I am in constant pain but this time because of TMJ and I am struggling with every day things because of my muscle wasting condition, however, I am older and a bit wiser and I have strength to overcome it.

Life is still good in many ways and I’d rather have life with all of its highs and lows and bits in between than not have the opportunity to wake up to a brand new day.

Everyone has bad days or bad phases in their life when everything seems to go wrong and that’s all it is: it’s just a phase and it too shall pass.

http://myneuropathybattle.wordpress.com/2013/02/