Tuesday, 2 July 2013

A Neuropathy Word Cloud

Today's post from neuropathy.org (see link below) is a little different in that it doesn't contain new information but is a call by the Neuropathy Association to put your neuropathy into words by means of a word cloud. It sounds like a game but there's a serious motive behind it. Very often people with neuropathy have difficulty describing their symptoms, both to their doctors and to their families and yet it's important that they do. There's nothing else like neuropathy and for that reason it's difficult to compare it to something else to allow people to understand. this exercise helps you find the right words to describe your situation. Sometimes you need to convince yourself of exactly how your symptoms feel and writing them down in this way helps you sort out the right choice of words.

What’s A Neuropathy Word Cloud?
By Natacha T. Pires, MBBS, Director Medical and Public Affairs June 27, 2013

As patients, we can relate to J. P.'s plea, “We have already lost our former way of life due to pain. Please don't let us continue to lose the closeness of our family and friends, who cannot understand or accept this disease [neuropathy].”

Over the past few weeks, we have been asking our members to share how they described neuropathy—in two words or less—to help family members and friends better understand their struggle with neuropathy.

The Responses Were Overwhelming!
We received over 300+ descriptors…most of which were used to update our Neuropathy Word Cloud—the goal being to create a powerful visual representation of what it means to have neuropathy. Why? Simply put—to get the neuropathy epidemic on the public’s radar. As one member recently shared, “Until you have neuropathy, you have no idea about my suffering…you can’t see it, you can’t feel it; so you assume I am fine.”

Why Create A Neuropathy Word Cloud?
Neuropathy is a 24/7/365 struggle for many, but it is important to remember that this disease doesn’t only affect you; it impacts those around you as well: family members, friends, colleagues... Most people have no idea what it is like to have neuropathy or neuropathic pain--nor do they understand.

Ongoing education, communication, and support are important tools to work with when neuropathy affects both you and your loved ones…it is the crux of what The Neuropathy Association offers to bring help, hope, and healing to millions suffering. Using these tools improves a family’s ability to work together to manage the day-to-day issues of living with a chronic disease. Getting family members and friends to better understand neuropathy is as much about getting the support, understanding, and care you need as it is about changing the public’s perception of the neuropathy epidemic impacting over 20 million Americans. And, the work of making this happen -- to accelerate more resources, treatment options, and cures -- is ongoing, and has never been more important.

A Powerful Visual Tool Descrbing Neuropathy, Shared By Thousands
To date, our Neuropathy Word Cloud has received over 17,000 views on Facebook. We thank everyone who shared descriptors to help us update our "Neuropathy Word Cloud" (we've used as many of the descriptors as we could...and please keep them coming!) aimed at kicking off a national conversation about neuropathy. And, a special thank you to Kari Abreu—our volunteer designer—for giving her time and expertise to make this initiative possible!


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