October is Lupus Awareness Month, and about time too - never has the need for an awareness month been stronger.
Because the disease, where the immune system attack healthy cells, tissue and organs, is believed to affect anywhere from around 50,000 people in the UK to as many as 1 in 500 adult women.
The trouble is, many of these people won’t be aware they have it.
Despite the fact that lupus is actually much more common than more publicised diseases like leukaemia or multiple sclerosis, it remains relatively unrecognised by both the general public and medical professionals - despite famous sufferers such as Seal and Lady Gaga trying to shed light on the disease.
And now pop star Selena Gomez has revealed that she is receiving chemotherapy after recently being diagnosed with the disease.
A survey by Lupus UK found that, on average, it takes seven and a half years to get an accurate diagnosis.
There are also different types of lupus – from the milder Discoid lupus erythematosus, or DLE – to the more serious Systemic lupus erythematosus, SLE. DLE tends to only affect the skin, while SLE can target any tissue in any part of the body.
• Joint pain
• Unexplained fever
• Swollen joints
• Prolonged or extreme fatigue
• Skin rash, particularly a butterfly-shaped rash across the cheeks and nose
• Swollen ankles
• Swollen lymph glands
• Hair loss
• Depression and anxiety
• Anaemia
• Mouth and nose ulcers
• Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)
• Memory loss
• Headaches/migraine
• Shortness of breath
This damage will be worse if the patient has SLE Lupus, not DLE. With SLE, lack of diagnosis can lead to potentially life-threatening complications like kidney failure, heart and cardiovascular disease, lung damage or stroke. Undiagnosed SLE can also raise the risk of pre-eclampsia, miscarriage, stillbirth and premature birth.
Thankfully, medicines like steroids and immunosuppressants means the disease can be controlled, and there’s no reason for sufferers not to lead a normal life, with a normal life-span; recent studies show the 15-year-survival is now around 85%.
That said, you will need to take some sensible steps to cope; experts recommend avoiding direct sunlight where you can, learning to rest when your body tells you to, and being open with friends, family and workmates about how the condition may affect you with depression and fatigue – that way, when you do have a flare-up, people will understand better.
Because the disease, where the immune system attack healthy cells, tissue and organs, is believed to affect anywhere from around 50,000 people in the UK to as many as 1 in 500 adult women.
The trouble is, many of these people won’t be aware they have it.
Despite the fact that lupus is actually much more common than more publicised diseases like leukaemia or multiple sclerosis, it remains relatively unrecognised by both the general public and medical professionals - despite famous sufferers such as Seal and Lady Gaga trying to shed light on the disease.
And now pop star Selena Gomez has revealed that she is receiving chemotherapy after recently being diagnosed with the disease.
A survey by Lupus UK found that, on average, it takes seven and a half years to get an accurate diagnosis.
Why is lupus so misunderstood?
Experts often refer to lupus as a great ‘mimic’, causing symptoms like fatigue, skin rashes, joint pain and swelling, all problems shared with a number of other conditions, meaning it can be hard to pinpoint the true cause. People tend to suffer various combinations of these symptoms too, and there is no real ‘checklist’ of a standard case.There are also different types of lupus – from the milder Discoid lupus erythematosus, or DLE – to the more serious Systemic lupus erythematosus, SLE. DLE tends to only affect the skin, while SLE can target any tissue in any part of the body.
What are the signs of lupus?
Again, because of the nature of lupus, the signs will vary both in range and severity in each individual case. Lupus works in patterns too, so symptoms often come in ‘episodes’ then may subside again for a while. But generally, the symptoms can be categorised as:• Joint pain
• Unexplained fever
• Swollen joints
• Prolonged or extreme fatigue
• Skin rash, particularly a butterfly-shaped rash across the cheeks and nose
• Swollen ankles
• Swollen lymph glands
• Hair loss
• Depression and anxiety
• Anaemia
• Mouth and nose ulcers
• Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)
• Memory loss
• Headaches/migraine
• Shortness of breath
What happens if you don’t get a quick diagnosis?
As with many medical conditions, the sad fact is that the longer you wait for a diagnosis and treatment, the more damage is being done to your body in the meantime; damage which, in the case of lupus, can be irreparable.This damage will be worse if the patient has SLE Lupus, not DLE. With SLE, lack of diagnosis can lead to potentially life-threatening complications like kidney failure, heart and cardiovascular disease, lung damage or stroke. Undiagnosed SLE can also raise the risk of pre-eclampsia, miscarriage, stillbirth and premature birth.
What happens when you do get a lupus diagnosis?
Being diagnosed with lupus can feel very daunting, particularly because of its relatively unknown nature and the potential dangers to major organs.Thankfully, medicines like steroids and immunosuppressants means the disease can be controlled, and there’s no reason for sufferers not to lead a normal life, with a normal life-span; recent studies show the 15-year-survival is now around 85%.
That said, you will need to take some sensible steps to cope; experts recommend avoiding direct sunlight where you can, learning to rest when your body tells you to, and being open with friends, family and workmates about how the condition may affect you with depression and fatigue – that way, when you do have a flare-up, people will understand better.
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