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Ben's Friends Monthly Newsletter - August 2014 Issue

Posted by Ben Munoz on August 26, 2014 at 8:49am 0 Comments

Just the Stats:

Communities: 35

Friends: 42,000+




In this issue…

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ClinicalTrials.gov Studies

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BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

 

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

Is any research being done anymore on non-inherited EM?

Started by Jane in General. Last reply by dkel9307 Sep 6. 12 Replies

I can't find any research done in the last 5 or more years that is on NON-inherited EM.  Only approximately 30% of EM patients have the inherited form.  Yet once a genetic mutation for EM was found, it seems all non-inherited EM research dried up.…Continue

Tags: EM, non-inherited

How We Live ! Features such headlines as " for the loveliest picture ever check Nels new photo of herself surrounded by very cute pixie people"

Started by Tizzy in General. Last reply by Tizzy 15 hours ago. 40 Replies

This discussion was initially to be about climate and how it affects our Em , but temperature is such an integral part our our lives and so strongly dictates the way in which we live it became obvious the thread needed to be called something else .…Continue

EM, Neuropathy and Fluoroquinolones

Started by joyfulj in General. Last reply by blue Aug 31. 11 Replies

Hi, my name is Jenn. I'm 23 years old and was recently diagnosed with EM. This past November, I was given Avelox ( A fluoroquinolone drug ) for a sinus infection. I have suffered severe adverse reactions from this drug. It started out initially with…Continue

Moderators

Started by Tizzy in General. Last reply by Alina Delp Sep 4. 5 Replies

After being away from the site for such an extended time ,I have realised the dedication and patience of the moderator team is quite extraordinary. They have continued to research ,support and answer all sorts of questions .Some of those questions…Continue

HELP ME NOW PLEASE- IN GREAT DISTRESS

Started by Twinkle Toes in General. Last reply by Veerla 8 hours ago. 9 Replies

BLOWING UP CONTINUALLY.  NO PAIN RELIEF.  LOST THE WILL TO LIVE.  SURVIVING IN BED WITH 63 DEGREE AIR CONDITDIONING.  BARELY CAN GET TO BATHROOM. FABRICS CAUSE PAIN.  TOTAL BODY TEMPERATURE DISREGULATION.  NO FUTURE.DOCTORS NO NOTHING, JUST HOW TO…Continue

Tinnitus

Started by Nel in General. Last reply by Alina Delp Sep 10. 12 Replies

Never had It before and now I'm getting a lot of it and associating it with the daily facial flares. Can be a roar, can be a whine and often I only realise it was there when it suddenly switches off.Does anyone else get this?Continue

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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 Seattlegirl's discussion Foot Surgery and EM
"I am no expert but have been hanging around hospitals a good bit lately, fracture clinic and…"
28 minutes ago
bluesnrocrul and mads are now friends
32 minutes ago
blue replied to Tizzy's discussion Tizzy Checking in !
"Okay, I thought that opiates had no impact really on my EM pain. I was woken suddenly about two…"
5 hours ago

Moderator
Nel replied to blue's discussion a question about opiate painkillers.
"I hope you had a good night blue. I hated the myoclonic jerking. There was no hope of sleeping…"
6 hours ago

This Week on Living With Erythromelalgia 

1 Twinkle Toes

Twinkle Toes

Palmdale, CA, United States

2 Tizzy

Tizzy

Queensland, Australia

3 blue

blue

Sydney, NSW, Australia

4 Ocker

Ocker

Melbourne, Victoria, Australia

5 Seattlegirl

Seattlegirl

Randle, WA, United States

 
 
 

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