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Here I am again with days 19, 20 and 21 of Lupus Awareness Month all rolled into one. And since some of this has already been covered I will try not to bore you for too long!

First of all, the good news is that I seem to have shaken off the cold I had (more or less) and am ready to spring back into action! Perhaps I should have chosen a better time to do this post (not 10 past 9 at night when I am usually getting into bed) but here goes!

Working backwards STEROIDS and SUN SENSITIVITY have been mentioned and referenced to other sites for more details so that’s that one covered.


Like Lupus RA is an autoimmune disease and for many people involves the same treatment regime. It tends to affect the joints but sufferers  can also experience other symptoms such as the debilitating fatigue that is common in Lupus. Since many of the symptoms may be the same in presentation Lupus can be  misdiagnosed as RA. If you pop over to the following website you can see how there are a multitude of autoimmune conditions that overlap or go hand in hand!

images (1)

FAQs about Lupus

  • can you ‘catch’ lupus?
  • what are the symptoms?
  • who gets lupus?
  • what are the treatments?
  • is lupus fatal?

When I was first diagnosed these were the questions that came into my mind. And then at each consultant appointment I come up with more and more.

My biggest fear was that I was going to die… the internet can do that can’t it? You read and read and have to sift out the current information. So is it fatal? Well, it can be and it can be life limiting but that is not the case for most people. Not so many years ago, and it is my understanding that as little as 20 years ago life expectancy was greatly shortened but the drug therapy has come along in leaps and bounds so most people have a normal life expectancy. However, since the disease is so unpredictable who really knows. I have mentioned in previous posts that whilst the drugs can be very effective they all carry a multitude of side effects and it is a case of managing these alongside the detrimental affect of the disease itself. A big problem is organ damage. Click on the pic to go to LUPUS UK to see this more clearly.


Lupus is not infectious or transmittable.

The main symptoms are-

  • Joint/muscle aches and pains
  • Permanent rash over cheeks
  • Extreme fatigue and weakness
  • Increased risk of miscarriage
  • Rashes from sunlight/UV light
  • Flu-like symptoms and/or night sweats
  • Weight gain or loss
  • Inflammation of the tissues covering internal organs with associated chest and/or abdominal pain
  • Seizures, mental illness or other cerebral problems
  • Headaches, migraine
  • Kidney problems
  • Oral/nasal ulcers
  • Hair loss
  • Depression
  • Haematological disorders including anaemia
  • Swollen glands
  • Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynauds)

Thankfully most people have a few but not all of these at any one time…FYI I can currently boast 8 of these symptoms and this is at a time when my blood tests indicate that the disease is not active and I feel relatively fit and well (bar the cold I have had!)

Here comes a DID YOU KNOW…

it is believed that in the UK 50,000 people may have Lupus  and that 90% of them are female, of course this also means that 10% are male.

There are  differences in how widespread SLE is among different ethnic groups. For example, in the UK:

  • one in every 5,000 white women will develop SLE
  • one in every 1,000 women of Chinese origin will develop SLE
  • one in every 625 African Caribbean women will develop SLE

(taken from

Treatments have been covered in another post but here is a different link if you want to refresh yourself-

And with that I will remind you that Lupus is currently INCURABLE which is why we need to spread awareness and help support the work of researchers who are trying to find a lupus specific drug. If only it was this easy!



Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.


  1. Pingback: Lupus Awareness Month: Days 22, 23 & 24 | ONOODLES

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