World Lupus Day 2024 is on Friday, May 10, 2024: The day my world fell apart, My mother was recently diagnosed with SLE Lupus.?

Friday, May 10, 2024 is World Lupus Day 2024. Diagnosed with Lupus? - Research Study for Adults 18+‎ You May Qualify. Pre-screen Online Now!

World Lupus Day aims to boost understanding of an illness that's little-known, but could have devastating effects on sufferers as well as their families. Lupis is really a chronic ailment that causes the defense mechanisms being over active, creating antibodies that attack healthy tissue. Lupus may cause discomfort, inflammation and damage in almost any area of the body and could be fatal. There's presently no known cure and around 5 million people are afflicted by lupus world-wide.Lupus Day was initially noticed in 2004. It had been organised by lupus organisations from 13 nations, who known as for government authorities to improve funding for research, have better patient services, increase epidemiological data and lift awareness.Lupus Day is connected using the colour crimson, and individuals can display support by putting on crimson clothing or purchasing special wrist bands using the phrase ‘Help Us Solve the Cruel Mystery.’ A hollywood supporter of World Lupus Day is Julian Lennon, who's a worldwide Ambassador.

I have lupus (SLE), it affects everyone differently so try to educate yourself and your mum about symptoms, what you can do to help etc as I've found the more I know the better I've coped.

The web site is great for info and support on lupus, and if your mum is in UK I would recommend she joins this charity as they are very good and also are likely to have a group local to where she lives which would give her chance to meet others with SLE.

There is some genetic link in who is likely to get SLE but this does not mean you will necessarily develop lupus

Please try not to worry many of us with lupus have a relatively "normal life" and anything you read about lupus being fatal is quite outdated. I personally know quite a few people in my local lupus group who have had lupus for decades.

When you have lupus it is important to be seen regularly by doctor or rheumatologist as well as taking any prescribed medication and I make sure I let my doctors know about any "alternative therapies" I'm considering trying.

If you are interested in things other than just medication try to encourage your mum to accept that she has lupus and can not do as much as she used to, (this can be the hardest thing to do as sometimes you feel relatively "good" & the tendancy to overdo things/catch up from when you've been on "bad days" can be hard to resist). Her life may have to be very different ( for example I had to give up my career) so just being there for her, helping out and supporting her will be a help to her.

It is important that you pace everything you do when you have SLE, so encourage your mum to rest when she needs to but not to over sleep (sleeping to excess does not help even though your body is constantly telliung you that you need sleep).

Also gentle excersise (swimming and gentle yoga work for me) as well as a good healthy diet that includes lots of fruit & veg helps keep my lupus under control.

Also be aware that sunlight/ u.v light can make symptoms worse and cause a "lupus flare".

I would be wary of anything that is called a "cure" for lupus, and have not found any herbal remedies that work, but my Dr prescribes glucosamine to help my joints which I think you can also get from health food shops. A general vitamin tonic can also be useful if you have been feeling so tired and poorly that you have not been eating properly.

I particularly like the site for info and this site has message boards that are really useful for both lupus people and their families.

Good luck, hope this helps

Did you know that May 10 is world lupus day www.lupus.org?

Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.

At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway, and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure.