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June 2014 Community Newsletter

Posted by Ben Munoz on June 29, 2014 at 10:00pm 0 Comments

Summer - the time of the year where some of our wonderful and fun memories are made. As a quote goes, "Life without love is like a year without summer."  Spend some time with your loved ones, enjoy the sights and sounds of nature and feel the…
Continue

ClinicalTrials.gov Studies

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What is Erythromelalgia (EM) ?

Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. The specific underlying cause of EM remains unknown.

Erythromelalgia may occur either as a primary or secondary disorder (i.e. a disorder in and of itself or a symptom of another condition). Secondary erythromelalgia can result from small fiber peripheral neuropathy of any cause, essential thrombocytosis (erythromelalgia can also develop in the presence of normal platelet counts in patients with myeloproliferative disorder), hypercholesterolemia, mushroom or mercury poisoning, and some autoimmune disorders.. Primary erythromelalgia is caused by mutation of the voltage-gated sodium channel α-subunit gene SCN9A.

Forum

Do you have any of these EM related diseases?

Started by mads in General. Last reply by Mona Jul 5. 24 Replies

                      Graphical network of the top 20 diseases related to Erythromelalgia:Continue

Any sugestions for a good climate when you have EM and Raynauds?

Started by Twinkle Toes in General. Last reply by kruizerchick Jul 12. 13 Replies

I live in Palmdale, CA. It is the High Desert. Today its 98 degrees and not too humid. Between the Raynaud's flaring and the EM flaring I am in agony all the time. In the house and out of the house.My (separated) husband just spent $5200.00 adding a…Continue

Flippant doctors...

Started by KateB in General. Last reply by Alina Delp on Saturday. 23 Replies

Hi everyone - I've been off line for a while...but I'm back! I went to Thailand recently and it was hot, and ironically my feet did not flare up as much as they do in cold weather (like right now in South Australia)... I don't really understand…Continue

Enigma?

Started by Witsend in General. Last reply by mads Jul 5. 4 Replies

Hello All!I'm new here and newly diagnosed with EM (still trying to figure out what else is going on). I've been suffering from severe fatigue, tingling, numbness (in arms, lower legs, hands, and feet), vertical ridges on fingernails, swollen lips,…Continue

Blisters and skin issues

Started by dkel9307 in General. Last reply by dkel9307 on Friday. 16 Replies

Hi EveryoneI hope you are all well, or as well as can be at least.I got checked into hospital yesterday - over the past few weeks, every knuckle in my hands has become red, swollen and really sensitive, plus all these blisters appeared...about 25-30…Continue

Discouraged

Started by otrame in General. Last reply by dkel9307 23 hours ago. 10 Replies

I've been searching for help for a long time, over 30 years at least. About 2 months ago I was prescribed pentoxifylline (trental) as a long shot for the erythromelalgia, which has been getting progressively worse, and had been changing even more…Continue

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Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity


Moderator
Nel replied to Scott Orn's discussion Sean Vikta & Blue Redefined Patient Organization Sponsors Ben's Friends
"Isn't that wonderful. I'm sure we are all grateful. So good to know there are such good…"
3 hours ago

Moderator
Nel replied to Emma's discussion new and scared
"Hi Emma, I am really sorry that everything has become so much worse since your little girl was…"
3 hours ago

Moderator
Nel left a comment for Emma
"Hello Emma and welcome to the group. From your photo it could be EM but not all hot red feet and…"
4 hours ago
Stardust67 replied to Bety's discussion Simple changes
"The current warm weather in the uk is making my EM much worse anything above 65 brings it on. Once…"
7 hours ago

This Week on Living With Erythromelalgia 

1 otrame

otrame

Tacoma, WA, United States

2 Bety

Bety

Whittier, CA, United States

3 Scott Orn

Scott Orn

San Francisco, CA, United States

4 laceyann99

laceyann99

Reading, MI, United States

5 TCP36

TCP36

Warwickshire, United Kingdom

 
 
 

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