Not many people realise that around 1 in 185 people suffer from a medical condition called Lupus. As May is Lupus Awareness Month we thought that it would be useful if we ran a Lupus blog.
The objective of this Lupus blog is twofold. Firstly to provide some basic information and links to
resources which provide more information about Lupus. Secondly it is to give people with Lupus and caregivers of people with Lupus the opportunity to share their stories. This sharing can also increase awareness among the wider community as well as providing support to lupus suffers.
So what is Lupus?
Lupus is an umbrella term covering a number of different conditions within the Lupus family. The condition normally called Lupus is also known as systemic lupus erythematosus or SLE.
It is an autoimmune condition where in effect the body’s immune system attacks the body itself. With Lupus the immune system is not able to differentiate between healthy tissue and viruses and bacteria. The immune system attacks on healthy tissue can lead to swelling, pain and leads to tissue damage.
Typical symptoms include:-
1) Skin rashes
2) Fatigue (for more information on fighting fatigue please go to http://patienttalk.org/?p=239)
3) Joint pain
4) It may also cause flares leading to fevers.
Current thinking is that Lupus will typically have a number of causes rather than just one. These may be:-
- Pregnancy – this is sometimes the trigger
- The Epstein-Barr virus (EBV) could be linked to child hood Lupus.
Sadly SLE is not at present curable but can be treated by various medications such as steroids and anti-inflammatory drugs. Avoiding sunlight is also advised. Many Lupus patients now lead reasonably normal lives compared to 50 years ago when life expectancy after diagnosis was low.
So what about you?
We would love it if people with Lupus, or their caregivers, could tell their Lupus story. We are interested in everything you have to say but the following questions might be of use.
a) When were you diagnosed with Lupus and how old were you?
b) What treatment for Lupus have you used and how successful have these treatments been?
c) What lifestyle changes have you made because of the Lupus diagnosis?
d) What do you think caused the Lupus?
e) What advice would you give to somebody who has just been diagnosed with Lupus?
Please use the comments box below to tell your story. Feel free to add any links to resources that you think would be of interest to our readers.
Thanks and help us promote Lupus awareness not just this month but every day!