Sunday, 21 September 2014

Neuropathy Images And Text To Make You Think

Today's post from recent posts on the Neuropathy Association's Facebook page (see link below) is nothing more than a series of images which may teach you something you didn't know about neuropathy. They are loosely based on the rarer neuropathies. Remember, there are over 100 different types of neuropathy although most people suffer from very similar symptoms, irrespective of the cause. These images may open your eyes to the variety of suffering that neuropathy can bring and you may have to Google a few terms to get an explanation but that's surely not too hard to widen your knowledge! Millions across the world suffer from debilitating nerve damage and we're nowhere nearer any sort of cure than we were 50 years ago!

Selected Neuropathy Association Facebook page Images
2014



Photo: PLEASE SHARE! Be sure to join us next week, Sept. 17th for our "Rare Diseases" Facebook Chat...: http://on.fb.me/1uoKw7c FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help” WHEN: September 17, 2014 (7-8:30 p.m. ET) WHERE: www.facebook.com/NeuropathyAssociation GUEST HOSTS: - Jeff Levenson (Adult Polyglucosan Body Disease Foundation); - Jack Johnson (Fabry Support & Information Group) - Courtney Hollett and Lori Sames (Hereditary Neuropathy Foundation); - Dr. Jinny Tavee (Cleveland Clinic Lerner College of Medicine) - Dr. Edwin Kolodny (NYU) Of the over 100+ different types of neuropathies impacting millions in the U.S. alone, there are several neuropathies that are considered "rare diseases." The following are just some of the rare neuropathies that we will be discussing during the Chat...we look forward to having you join us!
Catching up on the Facebook chat is possible via the neuropathy association home page


Photo: PLEASE SHARE! It's #ThrowbackThursday ... and we're going back to Spring 2013 -- when we launched our debut Neuropathy Word Cloud campaign. The goal: 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. Read about it here - http://bit.ly/1mZ5rx5 #tbt

Photo: Today marks the start of Pain Awareness Month. Chronic pain affects more people in the United States than these three major health conditions. Share to raise awareness for chronic pain. #painawarenessmonth #chronicpain

Foto: Fact: Fabry disease really only has two outward signs, but they don't occur in everyone. There is a very characteristic eye finding that can only be seen with a slit lamp called a corneal opacity and a rash like appearance on the skin. The rash is made up of many small dark red to purplish dots that can vary somewhat in size and are called angiokeratoma. In males they are usually in the belly button and may occur on the trunk down to the knees in what is referred to as a bathing suit distribution. They are less predictable in females.

Foto: HAVE SARCOIDOSIS AND NEUROPATHY? There is a new clinical research study assessing whether “ARA 290” is effective in the treatment of the neuropathic symptoms of sarcoidosis...: http://1.usa.gov/1fjWvsm. Although the study is already closed to new participants, another trial may be opening up in 2015. More information will be available later, but if you have any questions, please contact the research study team at martint5@ccf.org.

Foto: PLEASE SHARE! "Like" this post to show your support for Charles Wood for sharing his inspiring MMN journey with our community. Read Charles' story here - http://bit.ly/1ogNDJ0

Foto: PLEASE SHARE! Focused on Multifocal Motor Neuropathy, this ‘Ask the Doctor’ column address Kari M.’s question: “I am 54-year old business executive and I’ve had a right “drooping foot” for three years. I had surgery on my right foot five months ago, but it did not help. My symptoms have been gradually worsening with cramping of the leg muscles. My doctors did a nerve conduction study which showed multifocal conduction blocks in the motor nerves, but not in sensory nerves. He also explained that my lab studies showed high titers of serum antibodies to the ganglioside M1 (GM1) and to the asialo-GM1, which are markers of myelin (the insulation of the nerve). I was diagnosed with multifocal motor neuropathy and treated with intravenous immunoglobulin (IVIG) which improved my symptoms dramatically. I’d like to get a better understanding for my diagnosis. What is multifocal motor neuropathy?” Read Dr. Jin Lou’s response here…: http://bit.ly/1sgEF04

Foto: FACT: Fabry disease is a rare genetic disease that usually presents in childhood or early adolescence. Symptoms include an inability to perspire, little body hair, fevers, gastrointestinal problems, renal complications leading to renal failure, and heart enlargement…: http://bit.ly/1oQfd0n

Foto: PLEASE SHARE! David Gibson shares his childhood experiences with pain and his Fabry Disease diagnostic journey…: http://bit.ly/1wwu4VD





Foto: PLEASE SHARE! "Like" this post to show your support for Rosina Johnson for sharing her inspiring CMT/CIDP journey with our community. Read Rosina's story here - http://bit.ly/14b0LpJ. https://www.facebook.com/NeuropathyAssociation
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