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Thread: “Erythermalagia in the Face Alone”

  1. #1
    Senior Member
    Join Date
    Sep 2016
    Country: Scotland

    Default “Erythermalagia in the Face Alone”

    There’s a whole series of articles to be found here, exploring the possibility that certain forms of facial flushing are a variant of Erythromelagia... they are calling it Erythermalagia.

    My symptoms were at their worst Right at the start of my ‘rosacea‘ journey in Summer 2016. The initial attacks (because that’s what they felt like) I experienced were extreme flushing of the face, ears, neck and upper chest that lasted for around 12 hours Non stop. Nothing would bring those flushes down... I swear I have a touch of PTSD to this day brought on by those attacks.

    I know that many people who come here also suffer greatly from flushing and that flushing..... and the pain that comes with it and lingers after it, causing the face to be in a state of almost permanent discomfort, are your sole symptoms. Similarly, as it was for me when things were at their worst, flushing attacks were brought on by exposure to even moderately warmer temperature (In my case, anything above 19 deg C could bring on a flush) or the flushes appeared to be random, with no apparent trigger other than, perhaps, the increased neuropathy that frequent flushes was generating.

    I have always wondered why this presentation should be grouped together with, say, papular pustular rosacea and considered to be a subtype/phenotype of the same disease - the symptoms are so different.. and if the “etiology of ‘rosacea’ is unknown“, how can one possibly know that each of these presentations is the same condition?

    Anyway... I’m 100% behind the possibility that some of us have don’t have rosacea at all, but have Facial Erythermalagia.

    ....And I’m not sure why that helps either you or I except I somehow feel vindicated.

    ... and maybe someone, one day, will take one of these articles to their doctor and just maybe, their doctor will listen....

  2. #2
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Centre, Alabama, USA


    Erythermalagia (also spelled erythromelagia) has been discussed here at RF for some time now, i.e., Its 2009, stop calling facial flushing and burning rosacea!, and there are other threads.

    “Erythermalgia” emphasizes the thermos (heat) – an essential part of the syndrome. Erythromelagia (EM) is the name of the disease, and is a rosacea mimic. Erythromelagia is listed along with many other diseases that present with erythema in a differential diagnosis of rosacea.

    The flushing involved with erythromelagia is differentiated from rosacea phenotype 1 when it involves an increased temperature primarily involving the extremities, and as your article points out, "with possible extensions to the ears, face, neck, and scrotum; in rare instances, it may afflict the ears, face, or the scrotum alone." Not all rosacea flushing involves an increase in heat. You can have flushing and not have EM. A dermatologist diagnoses EM legally and ethically for the state and Medicare, and of course for insurance purposes.

    Haven't read that erythromelagia can coexist with rosacea, but it may be possible?

    What is really important to know is that The Erythromelalgia Association (TEA) is made up of 3000 volunteers. Just like the RRDi whose board of directors all suffer from rosacea, TEA's board of directors have at least five who suffer from EM. In 2018 these volunteers donated $50K for EM research, and actually spent $75K on 'research directly related to erythromelalgia.' Isn't that the way a non profit organization should work? Compare that with the three other non profits for rosacea who spend most of its donations on private contractors owned by one of the board of directors or on it members who are mostly dermatologists for meetings and conventions, and very little, around ten percent on rosacea research. The three other non profit organizations for rosacea are run by business professionals or dermatologists and not one of the board members suffer from rosacea which explains why and how these three other non profit organizations for rosacea spend the donations. Will rosaceans ever be united and support a non profit organization like TEA? Hope.
    Brady Barrows
    Blog Join the RRDi

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