Our Voice / May 2014 17
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What are the misconceptions of Lupus?
There are lots of misconceptions about lupus, here are main ones for me.
*** It's something to do with the immune system, is it like HIV/AIDs?
The answer is no, there are many immune related illnesses like Rhematoid arthritis & type 1 diabetes. Lupus isn't catching, it's an overactive immune system which mistakenly attacks healthy cells when going about its usual business of keeping us healthy by fighting off everyday bugs & infections. HIV/Aids is an Acquired disease usually through sexual activity which creates an immune deficiency which stops the body from fighting off infections that a healthy immune system would normally deal with.
*** It only affects women.
While its true that the majority of lupus survivors are women between 15 & 44 with a high percentage of those being non Caucasian. It also affects children & men, Micheal Jackson being a famous example.
*** The Look good disease & those with Lupus are just being lazy.
Many people with lupus may not look ill on the outside, but they are physically ill. Assumptions can be that we are just being lazy & milking it, people can be insensitive to how your feeling & this can be very depressing. Fatigue is commonplace for me, but when I'm having a flare it can last days, weeks or months & range from bad flu-like symptoms to feeling like I've been hit by a truck.
What are you doing on SL and/or RL to make the community aware of Lupus?
When i became more open about my lupus, I looked around on SL for Lupus groups, the few I found seemed inactive. The more I spoke about it, the more i became aware of other survivors & people who knows someone with it or even lost a family member in RL. I'm not able to do too much in RL so I started the Lupus Awareness Foundation as a means to raise awareness & fund-raise, . I am encouraging my RL family to get more involved & do sponsored events, I'm hoping to be well enough to participate myself this year. days, weeks or months & range from bad flu-like symptoms to feeling like I've been hit by a truck.
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What are you doing on SL and/or RL to
make the community aware of Lupus?
Lupus is an autoimmune disease, a type of self-allergy, it attacks healthy
tissue that can lead to extreme fatigue, joint pain, muscle aches, anemia,
skin rashes, hair loss, & destroy vital organs.There is such a wide variety of
symptoms from mild to severe that the illness is experienced in many
different ways for many survivors. It can be managed with medication &
lifestyle changes, but it can also be fatal. Constant pain, depression, mental
confusion known as 'the fog' & seizures can be experienced by some
survivors & not only impacts on those with the illness but on their family
& friends too.