Lupus- the Pandora’s box: when all hell breaks loose

January 19, 2014

lupus pandora box

Lupus has long been represented by two mascots: wolf & the butterfly.
The word ‘Lupus’ (Lupus- wolf in Latin) was coined by a thirteenth century Physician Rogerius as the facial lesions in Lupus looked like wolf bites. The butterfly as a mascot has its origin in the butterfly shaped malar rash seen in SLE.

There have always been debates regarding the ideal mascot for lupus. The wolf is a sinister, cunning animal. It aptly represents what Lupus can do to a person & also represents the origin of the name. However, as a mascot, it has a negative impact.

As against this, butterfly is beautiful & represents vitality. Many have even compared the life history of a butterfly emerging from a cocoon to a Lupus patient emerging with flying colors from a flare.

As I was reading the journal Lupus the other day, a beautiful explanation held my attention. The author MJ Fritzler has highlighted the Greek mythological story of the Pandora’s box in an article.

According to the Greek mythology, Zeus, the father of the Gods & men, ordered Hephaestus, the God of craftsmanship to create Pandora, the first woman on earth. She was endowed with many gifts: clothed Athena, endowed with great beauty by Aphrodite, and eloquent speech by Hermes. After Prometheus stole fire from heaven, Pandora was given a beautiful container by Epiphemus. Pandora was given explicit instructions not to open the container under any circumstance. However, another of her God given traits, curiosity eventually got the better of her & she opened it only to find that all evil escaped & invaded the entire earth. Realizing her error, she tried to make amends by closing the container, but the entire contents had escaped, except for one thing- a winged creature with iridescent wings – the personification of Hope named Elpis.

This story would aptly describe what a Lupus patient goes through. Once diagnosed, it seems like the Pandora’s box is opened because ‘all evil’ seems to break loose. It is the butterfly that gives the hope.

Indeed, over the years, the butterfly has brought hope to lives of Lupus patients & the prognosis has improved significantly.

References:

Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439

Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fifth edition published 2010)

http://lupusadventurebetweenthelines.wordpress.com/2012/04/24/lupus-and-its-mascot-butterfly-or-wolf/

Reflections on Lupus 2013: butterflies, wolves and prophecies MJ Fritzler Lupus, October 2013; vol. 22, 11: pp. 1092-1101

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Lupus App

May 26, 2012

Mobile technology has come a long way & become a part & parcel of our daily life.

Why not have a mobile app that can help you manage your ailment in a better way?

I’m in the process of designing an android app for Lupus.
It would —

1) Help you manage appointments better.

2) Keep a track of your Lupus activity

3) Make a note of questions you want to ask your Rheumie.

4) Store all the important snaps (eg. a rash that you have) for showing it to your Rheumie later.

5) A Lupus ebook.

However, the best Lupus app can only be designed if I know what you want from it.

Kindly post your suggestions ( however silly, weird they may sound) so that they can be incorporated in the app.


Top 7 Lupus myths

May 6, 2012

Myth 1: Lupus is contagious.

No. Lupus is not contagious. Lupus is an autoimmune disease & is not caused by a virus/ bacteria or other infectious agent. Hence it is not transmitted from one person to other. However, it may be transmitted by mother to her unborn baby due to transfer of antibodies across the placenta & is called neonatal lupus.

 

Myth 2: Only women get Lupus.

No. Though 90% of patients with Lupus are women, it can affect a man. Female sex hormones are responsible for this women preponderance.

 

Myth 3: Lupus is easy to diagnose.

Lupus may not always be easy to diagnose. Lupus may present in many atypical ways.

 

Myth 4: Tiredness in a Lupus patient is due to depression.

Lupus fatigue is a known entity & is not caused due to depression.

 

Myth 5: Lupus is ‘all in the mind’

Not at all. Some of the manifestations of Lupus (like lupus fatigue, lupus fog) may not be visible. However, they are very much real & not ‘all in the mind’

 

Myth 6: One need not bother about exposure to sun rays if there is no photosensitivity.

No. A Lupus patient should always stay protected from sunlight. UV rays are a known trigger for lupus.

 

Myth 7: One need not take Lupus medications if there are no symptoms.

Lupus is a chronic illness & requires long-term medications. Stopping the medications abruptly may lead to a relapse/ flare of Lupus. Hence Lupus patients need to continue the medications even when there are no symptoms. All the decisions regarding the medications must be left to the Rheumatologist.


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