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
Lupus Awareness Month
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 https://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:-
- Stress
- Genetics
- 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!
I have discoid Lupus…..was treated for another skin decease when I was 29!!!took 4 years then developed a hole in my eyebrow….I get lots of flares on my face …I also feel tired all the time!!!!my body is constantly aching esp legs…..do not sit in sun!!!which I like….I get a lot of flares in the winter or when I have late nights…often tested for SLE but always come back neg but usually have test when I have not got flare and am told these tests are not a hundred per cent…..I feel embarrassed when people say how red I look too.I am 59 years old now and its just as bad as ever tried all the creams and anti malarial tablets too …I have never been tested when I have the butterfly effect either would just love a clear skin ….would like to hear of anyone else with discoid Lupus and if they get any other symptoms ……….
I am a lupus survivor of 21 yrs diagnoised at 19 now 42. I was sick for one year before being diagnoised and i went through hell before being diagnoised. I had just had a baby and i think that is what flared up the lupus however no one knew it was lupus at the time. I tell you this when i obtained the butterfly rash that is what told it all. I wasn’t even sad at that point but happy that i could get some medications in me so i would have to not suffer no more. I have SLE I have some kidney envolvment but thank GOD nothing life threatning. I was in the hospital in 1998 for a life threatning flare that doctors didn’t know how to treat me because they didn’t feel it was a flare even though i had told the doctors. I was hospitalized back in forth for 2 months during this time. this was emotional turmoil for me because i couldn’t take care my 9 year old daughter. long story short i woke up in the hospital an got out the bed an fell an that is when they gave me a large dose of steroids and b4 the day was out my 105 fever was gone an i was like a new person I at this time cannot work because my lupus appear to be unstable. I was a child protective specialist which envolved long hours little to know sleep stressful work conditions an no time for me to keep up with doctor appointments. I was carried out the job in 2011 by ambulette because I couldn’t walk my joints an muscles just tightened up on me.
Come to find out i had flared up. I know this was because of the stress of the job. I been out since then an now seeking assistance for SSD (social sercurity disability) because i just cannot work right now. However i never say never because i have faith that i will get better. I am now on Imuran 150mg, 4mg steriods, plaquinil and mexetrexate 10 pills once a week. I also take a host of other drugs that puts me into the pharmacy business. Lupus has impacted my life tremendously. I just don’t have the energey to do things that i used to do. I was out of the house alot an envolved in alot of activities even activities in my 13yr old son school. but the chronic fatigue has put limits on my ability to do that. My medications play a roll as well because i cannot swallow pills so i crush them and this alone leaves me feeling miseralble. As for me i believe lupus genes played a roll in my diagnoise because my maternal aunt and my maternal grandmother both carried the illness and are now deceased because of lupus complications. So i am the only one left in the family with it thus far.
I am a very strong person and what i did was take myself out of the box i took the focus off myself an i focus on others who suffer with lupus an i thrive off of empowering . educating, encouraging, inspiring and being a voice for other lupus patients. The best advice i can give to people with lupus is also to reserach and educate yourself about lupus because the more you know the more you grow. The more you grow the nmore you can cope period. If you know enough about lupus you will know you won’t feel bad forever. You will have your good days and when you do take advantage of it, but with limitations. Keep a support system around you, join support groups, stay connected to friends an family. Join online communities for people with lupus. If you are on facebook just search for lupus groups. Last but not least seek therapy it helps to talk out your feelings because lupus acn cause excesive depression so why not talk to trained professionals because they can coach you with trying to find effective ways to cope an get through those bad days. My motto lupus may live in my body but homeless in my soul. Continue to live an not just exist. I started my company eye candie lupies network that ws built around all the lupies out their and their hearts in mind. If you are wanting to learn more about me an my life with lupus follow me on my lupus empowerment mentoring channel on youtube.
Subscribe an celebrate MAY LUPUS AWARENESS MONTH AS I PRESENT LUPUS HEALTH HUSTLE PROJECT.A SERIES OF VIDEOS FROM MAY 1ST 2013-31ST STEMING FROM HEALTH AN WELLNESS, MY LUPUS LIFE, AN SO MUCH MORE YOU WON’T WANT TO MISS THIS SUBCRIBE BELOW:
http://www.youtube.com/kolaslifeanlupus THANKS FOR LETTING ME SHARE.
I was diagnosed last year after 7 years of searching for an answer to what was going on. I was diagnosed with MS first and then RA and, finally, SLE. I have organ-threatening SLE and it has attacked my heart, lungs, kidneys, and brain. My kidneys and brain were the first (besides the joint pain) to be recognized and I am on anti-seizure meds, malaria and chemo medications for those. I am also on medication to protect my heart and lungs and keep an inhaler on me at all times since I have quit breathing once altogether.
I have spent the last two years in and out of hospitals for various reasons and have found that I cannot follow a “normal” lifestyle but need to keep a low key lifestyle in order to maintain a semblance of health. I had a bout of CNS lupus when I was working long hours (the inflammation made its way up my spinal cord to my brain) and I don’t want to repeat that. I had a difficult time even telling the time on the clock at that point.
Now I live with joint pain and some headaches but I am not in fear of losing my life, thanks to my team of doctors who worked with me and explained everything to me and took a lot of time at each appointment in the very beginning.
I was very surprised by how many young people have been diagnosed with Lupus …. And my rheumatologist confirmed to me < Yes! Lupus is a disease of young people … It is so depressing data…
risovic Lupus doesn’t discriminate and i have heard anywhere from a 5 year old being diagnoised. Very complex illness but you stay positive an read my blog above and stay in the know it helps. I love all my lupies at their an i extend myself to you and all others in any way that i can. Ithrive off of empowering womem/men with lupus to help them maintain their sanity and mental swag. Feel free to follow me on my lupus empowerment channel for more support. GOD BLESS YOU. I was diagnoised at 19 now 42.