What does Lupus look like?

Posted: October 12, 2011 in Specifically Lupus
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Following on from the previous entry, a poem by Mary Hastings “When You See Me”, I thought it would be a good idea to try to explain to the “normal” folk what Lupus looks like…

For the most part someone with Lupus doesn’t look any different to any other person, however, there are some tell tale signs that can give the game away, particularly when someone with Lupus is suffering a flare.


There are various different forms of Lupus Erythmatosus and so to Clarify from the start:

  • Discoid Lupus Erythmatosus (DLE)
  • Drug-induced Lupus Erythmatosus (DILE)
  • Systemic Lupus Erythmatosus (SLE and usually what is referred to as “Lupus”)

There are other various types and sub-types but to save on brain-overload I’m not going to cover them here.

Typically speaking, in most forms of lupus, there is some form of skin manifestation. In some types (DLE in particular) the rash seen is on sun exposed areas and if not appropriately treated may leave permanent scarring. In other forms it can be seen as a “malar” rash, a reddening across the bridge of the nose and across the cheeks.

These rashes are only seen during a “flare” of the disease (with the exception of any permanent scarring of course)

Discoid Lesion

Discoid Lesion

Malar Rash

Malar Rash

And that is pretty much all there is to see when it comes to lupus…

…unless the person with lupus has any associated conditions.

The Visual Appearance of Associated Conditions

Raynaud’s Disease – Triggered by stress or the cold, the blood vessels in the extremeties go into spasm and restrict the blood flow. The affected area will turn to white then blue then red (how patriotic…) before returning to it’s normal colour. It is typically numb but then it can be painful with a sensation of pins and needles when the circulation returns to normal.
Cause – Unclear
Treatment/Cure – Keep warm & stay healthy, in moderate cases steroids are used, in serious cases a sympathectomy may be an option, however, there is no cure.

Scleroderma – a hardening of the skin that can be a complication of raynaud’s (but not always). It is generally seen on the fingers giving a “waxy” appearance particularly around the nail beds that may become inflamed and, as such, appear red.
Cause – Unclear
Treatment – treatment of the symptoms only, no cure.

That is pretty much all a “normal” person is going to see when it comes to Lupus (and associated conditions) to indicate a flare. That is unless they are looking up the sufferers nose or in their mouth, or perhaps paying particular attention to there eyes.

The only other possible sign would be something to indicate pain, i.e. limping or favouring a particular side of the body. (I refer to an earlier post [Hiding Lupus] – …If only pain made your skin change to green or nausea make you develop bright purple spots or those subtle twitches developed into a full blown futterwacken…)

In short, to the casual observer, we appear to be healthy individuals. When fatigued I don’t carry my luggage under my eyes, when in pain I don’t change colour… I look (more or less) like I did yesterday and (more or less) like I will tomorrow.

I’ve only really included my personal “features”. Lupus is different to each sufferer and so there will be things I may not have included or may have included appearances that they don’t have.

Feel free to add your own “appearances” in the comments…

  1. Iris Carden says:

    Most people looking at me wouldn’t see anything that looks “different”, except that perhaps I wear a bit too much make-up. (Without make-up I look incredibly pale, tired, with bags under my eyes.) Strangers don’t know I’m sick.

  2. […] What does Lupus look like? […]

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