Friday, 10 May 2013

World Lupus Day 10th May

Today is World Lupus Day.  May is Lupus Awareness Month.

Some of you may be aware that I have Lupus and I thought I would share with you all a little bit about this disease.

Systemic lupus erythematosus ~ Lupus is an auto-immune disease.

In a normal healthy body the immune system attacks foreign objects like bacteria and viruses.  With Lupus the immune system creates an excess of antibodies which attach themselves to healthy tissue causing inflammation, pain and damage.

There are varying degrees of Lupus and it is a life threatening disease.

Lupus can affect anyone but 90% of cases are women and most develop this condition in their reproductive years.

After many years of research they still don't know what causes Lupus but they believe some possible triggers are;

Hormones, some medications, diet, viruses, bacteria, stress, genetics, pregnancy and exposure to UV light.

Lupus can affect every part of the body, Brain and Nervous System, Heart, Lungs, Liver, Reproductive, Blood, Immune System, Kidneys, Joints, Muscles, Tendons etc....

Some of the symptoms of Lupus are:

Fatigue, pain, fever, skin rashes, joint swelling, Pleurisy (Lung inflammation), Depression, Nephritis (Kidney inflammation), visual disturbances, Anaemia, Pericarditis (Heart inflammation), Brain seizures, swollen Lymph nodes etc.......

Lupus is a difficult disease to diagnose because it mimics many other diseases and it can take years for a proper diagnosis to be made.


Treatment depends on your symptoms and the severity of your Lupus.  Some treatments include:

Pain killers, Anti-depressants, Non-steroidal anti-inflammatory drugs, Steroids, Antimalarial drugs, Immune suppressants such as those used in Cancer treatment.

One of the best descriptions I have ever read about what it is like to live with Lupus is called
"The Spoon Theory" and you can read about it here.

I have had Lupus since I was 15 but it took many years for a proper diagnosis and it has been a long and often very painful journey.

What has hurt me the most is people's lack of understanding and compassion about my disease because,

"You look so well"

and the most hurtful comment I have ever received is;

"Well at least you don't have Cancer"

If you would like to learn more about Lupus please click on these links below.


  1. That bugs me so much when people say that someone looks fine just because their illness is not on the outside, i myself have a few conditions but my main one NCS (neurocardiogenic syncope) no one believes is real until i pass out. I think the fact that you still continue with every day life is amazing, keep strong my dear :)

    Elle xx

  2. MyBeautyJunction10 May 2013 at 02:31

    Your fighting spirit and positive outlook are absolutely inspiring and are an eyeopener to those of us who keep whinging about smaller problems which can easily be tackled. People can be so un-understanding that it is cruel. As I said in my reply to your comment, I'm going to share this with my Gramps when I next see him xoxo

  3. Great post Jac - I had no idea about this illness - thanks for bringing awareness :)

  4. Thank you for this post. It's extremely hurtful when people are unable to take a holistic approach in understanding disease or illnesses. It disgusts me when people are so narrow-minded that they'd justify someone's well-being based on their appearance. You are a strong and resilient woman Jac! xx

  5. Thank you Lily I try very hard to keep a sense of humour in all I do because it really does help :o)

    Thank you for you kind words, it means so much to me x0x

  6. Thanks Kayte, I wanted to do my little bit for Lupus Day/Month, many people are not aware of this disease but I meet more and more people who are diagnosed all the time on Facebook.

    Thanks for leaving a comment x0x

  7. Hya Hunny, you give your Gramps a big HUG from me the next time you see him, let him know someone in Australia is thinking of him and sending lots of positive energy and love his way.

    Jac x0x

  8. Elle, I sometimes get really tired of people accusing me of faking it and putting it on to garner sympathy. Why oh Why would anyone want to pretend to have Lupus?? Beats me.

    Keep well my friend, thinking of you x0x

  9. People are just too cruel ssometimes, but at least you know yourself you're not a liar and you are making the most out of your life <3 xx

  10. Stay positive all the time, it has taught me a lot and never to judge others because you just don't know what they're going through xx

  11. MyBeautyJunction12 May 2013 at 23:38

    Thanks so much - hug delivered, Gramps is speechless about this and says he has a lot to learn about dealing with crisis and from a strong girl who is his granddaughter's age.

  12. Tell him it will only make him stronger, I am a firm believer we are only given what we have the strength to deal with, another hug on the way :o)

    Jac x0x


Please leave a comment I love to hear from you and I will reply to all x0x