Erythromelalgia Warriors: Patient Support & Information Network

 You are fierce               You are a survivor            You are a fighter through  and through                  You are brave              You are courageous            There is an EM warrior  within YOU!

April 1st 2019

Gabapentin and pregabalin will be classed as controlled drugs in the UK  as from April 1st. See your surgery if concerned.

January 2019

• Genetics and Pain Sensitivity Research Program. The aim of the study is to create a patient registry and learn more about the cause, progression and underlying genetic basis of certain rare diseases – with a particular interest in EM patients/families who do not have the Nav 1.7 mutation. Full details Genetics and Pain Sensitivity Research Program

July 2015

• Xenon announces follow up to the primary genetic study, which will focus on facial EM. Xenon are currently inviting certain participants from the 2013 genetic study to take part in a survey on facial EM. Participants are being asked to fill in an online questionnaire and provide a saliva sample (if requested). This is fantastic move forward for the EM community!  :)

August 2015

• FDA OK a new drug 'Finacea' for Papulopustular Rosacea.

October 2015

• Xenon are still performing free worldwide genetic testing with saliva kit.

November 2015

• 'Tonmya', a drug developed for the treatment of fibromyalgia, could be available end of 2016. For more information http://www.affirmstudy.com/

January 2016

• EM transdermal 'Midodrine' developed by Mayo clinic available through compounding pharmacists.

February 2016

• IMC-1 promising fibromyalgia drug fast tracked by FDA.

March 2016

• New findings potentially provide several new drug targets - CSF1, CSF1 receptor, and DAP12 - that have huge therapeutic potential for neuropathic pain.
  
• Drug candidate ZYN001 that delivers marijuana via skin patch soon to be developed for fibromyalgia.
• Beiersdorf study shows licorice extract can help rosacea.
• CDC release new guidelines for opioid prescribing for chronic pain.

April 2016

• Carbamazepine reduces pain in S241T inherited erythromelalgia mutation. Researchers demonstrate very clearly that it is possible to use genomics and molecular modeling to guide pain treatment. We have the research paper 'Inherited erythromelalgia due to mutations in SCN9A: natural history, clinical phenotype and somatosensory profile' in resources.

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