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.
THERE IS NO CURE
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.
http://www.lupusnsw.org.au/
http://www.lupus.com.au/
http://www.lupuswa.com.au/
http://www.lupusresearch.org/
http://www.lupusuk.org.uk/
http://www.lupus.org
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 :)
ReplyDeleteElle xx
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
ReplyDeleteGreat post Jac - I had no idea about this illness - thanks for bringing awareness :)
ReplyDeleteThank 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
ReplyDeleteThank you Lily I try very hard to keep a sense of humour in all I do because it really does help :o)
ReplyDeleteThank you for you kind words, it means so much to me x0x
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.
ReplyDeleteThanks for leaving a comment x0x
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.
ReplyDeleteJac x0x
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.
ReplyDeleteKeep well my friend, thinking of you x0x
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
ReplyDeleteStay 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
ReplyDeleteThanks 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.
ReplyDeleteTell 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)
ReplyDeleteJac x0x