26 04 2013


I discovered an image shared by a friend on Facebook today raising awareness of the condition, LUPAS.

I have dutifully shared this but to be honest it is not a condition I know a lot about despite the fact that I myself was diagnosed over 10 years ago.

Embarrassingly, most of my knowledge about the condition comes from American TV series House starring Hugh Laurie. My understanding from this show is that although doctors test regularly for LUPAS, it is almost never what the patient is actually suffering from.

Except sometimes it is…

LUPAS is an autoimmune disease that can be fatal. Basically the immune system becomes confused and attacks healthy body tissues sometimes including organs. I found the following list of common symptoms on the internet posted by a medical professional recently diagnosed with the condition:


  • Painful or swollen joints and muscle pain
  • Unexplained fever
  • Red rashes, most commonly on the face
  • Chest pain upon deep breathing
  • Unusual loss of hair
  • Pale or purple fingers or toes from cold or stress (Raynaud’s phenomenon)
  • Sensitivity to the sun
  • Swelling (edema) in legs or around eyes
  • Mouth ulcers
  • Swollen glands
  • Extreme fatigue

Before my diagnosis I visited my GP about the fact that I was losing my hair. At the time I honestly thought he would recommend more iron in my diet or some other smple fix for what I viewed as a trivial asthetic problem.

I was not expecting a biopsy.

The diagnosis shocked me at first, but I resolved not to research the condition furthur. I do not want to ever be defined by an illness. I refuse to allow a medical condition to hinder my day to day life. My Mother gets most upset with me about this and thinks I should slow down and when I am rundown that I should consider whether my condition is playing a part. When I was first diagnosed I used anti-malarial medication  that made me feel ill and I stopped eating – screw that! Who wants a cure that is worse than the original condition? I do not want any furthur information about LUPAS as I do not want to suffer imagined symptoms simply because I have read them on a website.

However I do suffer from fatigue and occassional depression because of this condition, I am extremely sensitive to extreme temperatures and I have a bald spot on the center of my head where hair will never grow back due to clinical scarring. It is difficult when you have a condition that is invisible to the rest of the world and when I try to explain it, the most I can say is “I get cold in winter, hot in the summer and feel tired sometimes”. Who doesnt?

God willing I will never experience the more agressive symptoms associated with LUPAS, as if I do I may need to confront this condition head on. But for now it will not become who I am and I will continue to push myself accepting it as a minor irritant but not a major issue in my life.




3 responses

26 04 2013
heather reid

Its not just your mother that gets most annoyed.

26 04 2013

Its an inconvenience – that doesnt mean it has to be a lifestyle choice for me.
I have decided not to let it be a problem 😛

29 12 2013
Mischief64 - AKA Caroline Fosbury

I understand your attitude completely. Dearly Beloved and I have the same feelings about our ailments, and we just carry in doing what we want when we can and choosing to make the less able times a chance to snuggle up together and chill out. You are who you are, not what you suffer with. X

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