Care and mobility considerations
Note: The disabling effects are only considered here for the condition of SLE itself and not with regard to the complications.
Disabling effects would be due to:
If serious organ failure occurs, such as in the heart, lungs or kidneys, those effects must be considered separately.
In mild disease there will be few or no disabling effects, as the consequences of the disease would not affect the person’s ability to look after him/herself or get about. However, fatigue and malaise may limit physical activities.
In active disease, fatigue and morning stiffness can affect self-care and mobility but with treatment, it is unusual for significant care / mobility needs to arise. Flare ups can vary from person to person and the intensity and length of the flare ups depends on the individual’s response to the disease and the treatment.
The course of SLE varies and is unpredictable, the systems involved vary from person to person and the involvement can be as follows:
Fatigue, fever, malaise and weight loss
Are all universal symptoms of lupus. Fatigue may be mild in chronic SLE and not affect the person’s ability to self-care and get about, to any extent.
However, severe fatigue, which accompanies a flare-up of the disease, may affect the person’s ability to self-care and get about, a great deal. The needs which a person may have, depends on how long the flare- ups last, how controlled the condition is and what the complications of the disease are.
Joint pain:
- Moderate joint symptoms can mimic early rheumatoid arthritis, but tends not to be erosive, unlike rheumatoid arthritis. However, tendons and ligaments can be affected, and that can impact on daily activities. This may affect peeling and chopping vegetables, managing buttons and small fastenings, handling medications, injections etc.
- Joint pain may be severe, and mobility may be affected to a variable degree.
Occasionally, some people may have destructive disease such as avascular necrosis of the hip, (which is the term for the ischaemia and death of the bone which may occur after injury. The neck of the femur is one of the bones of the body particularly susceptible to this occurrence). This complication would cause significant pain and affect mobility.
- Jaccoud’s Arthropathy may occur in a small percentage of people (It is a deformity of the fingers and thumb which is a consequence of tendon inflammation and damage). In these cases the effects (dressing, hygiene, vegetable preparation, and the ability to manage boiling water) are due to this complication.
Click the link for details of:
Organ Complications:
- Central Nervous System - the person may develop milder symptoms such as migraine, depression, damage to a single nerve in the arm or leg, or more severe symptoms such as psychosis, fits, stroke, and other neurological complications. Disabling effects would be likely to be a consequence of complication, and may be very significant
- Kidney - Kidney disease is often rapidly progressive and difficult to control, leading to kidney failure. Again, any disabling effects will be as a result of kidney failure, or the need for dialysis, or transplant
- Heart and Lungs - Pericarditis, damage to the heart muscle itself or the coronary arteries, pleurisy and restrictive lung disease (pulmonary fibrosis) may all be a consequence of the disease.
There is a major risk of accelerated atherosclerosis, ischaemic heart disease and thromboembolic disease.
Individuals are advised to stop smoking.
Ability to self- care and get about may be seriously affected by these complications
Skin complications
Skin rashes, hair loss, and mouth ulcers are a nuisance, but do not in themselves cause lasting disabling effects.
The person may have to avoid sunlight and other sources of ultraviolet light. Hair loss may be reversed or may remain permanent because of scarring. This can cause emotional distress.
Mouth ulcers and ulcers that occur in other sites (such as the nose) can occur in crops and can be quite distressing.
Raynaud’s Disease can be secondary to lupus; persistent Raynaud’s Disease may lead to problems with self- care, because of the effects on manual dexterity.
Basically, SLE is normally a treatable, manageable condition for the majority of people and treatment aims to control disease activity and enable independence. Also, it is important to note that the severity of the disease cannot be judged on the basis of the type or dosage of the drugs used to control the disease.
All information must be taken into account when considering the duration of disabling effects and the duration of disabling effects must be based on the particular circumstances of the individual claimant.
Amended November 2008
