Hello Bernard and Bernard's Mum
It is extremely difficult to get a good understanding of this disease, when you are suddenly plunged into it cold. It doesn't compare well with the chronic diseases one might be familiar with.
First of all, it's not regarded as progressive. It's hard to tell how it might develop if it does at all, but one thing is sure: the sooner it is effectively treated the better
Second, lupus takes many different forms, affecting each person individually and with differing degrees of severity. Another feature of lupus is that it tends to come and go with periods of stability or even remission and unpredictable greater disease activity known as flares.
When somebody says they "have SLE" the first question has to be, " and how does it affect you?". It's a multisystem and organ disease and although it's classed as rheumatological because the most common feature is joint aches and pains, many other specialists can be involved in the more complicated cases.
For many lupus sufferers their symptoms are mainly arthritic with fatigue, photosensitivity with or without skin involvment, maybe a tendency to blood abnormalities such as anemia. Their symptoms are relatively easily controlled. and they respond well to medication. They lead normal lives have normal lifespans, making whatever lifestyle adjustments they need to make, and they rarely post on forums because they have no problems.
There's an overwhelming amount of information about all the possible guises of lupus and similar conditions and a lot of it will never affect a particular individual. To get to grips with a particular case you need information about that case and to cope with it effectively you need to be proactive.
Find out why your Mum was diagnosed - what symptoms and what tests have been done so far. What are the further tests and what are the results of those. You will be empowered by information and better able to dialogue with the doctors. You can also judge if everything has been done as it should be, and if medications prescribed seem appropriate and adequate.
It makes no sense to to give a systemic lupus diagnosis and then say the skin is the only organ affected. If that were so, the diagnosis would be some form of cutaneous ( skin) lupus, not SLE. Not to over dramatise, but SLE is a weighty diagnosis because it makes insurance virtually impossible even if the person is minimally affected without any inner organ involvement.
Clearly you are still in the investigative stage and will be having follow up consultations when hopefully your Mum's status will become clearer.
This forum is a fantastic resource with many very well informed and experience members through whom you can access reliable "pre digested" information to save you wading through innumerable articles some of which are poppycock and others very misleading. I would swear that Wikipedia article is very different from what it was a couple of years ago and has some very odd features. That's another topic, but it certainly is not very helpful.
Also beware commercial sites making huge claims for "natural" cures. Do your Mum a favour and don't start recommending these sorts of things.
Another excellent source is the Lupus Foundation of America's site at
www.lupus.org
For now, I suggest you look at the symptoms, and diagnosis and testing sorts of articles as well as the criteria lists at the top of the Not Yet Diagnosed section. See which of the signs and symptoms your Mum has or is experiencing.
Make sure that urine has been tested. Very often thyroid, diabetes and B12 deficiency are tested too. It sounds as if your Mum should take great care with sun exposure: most lupus skin problems are UV sensitive and it's thought exposure can worsen systemic disease even when the skin doesn't seem affected
Just let us know if you need any help
All the best and bye bye for now
Clare
