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Systemic lupus erythematosus - An example of unetiological medicine
- Nikola N Ilankovic, M.D.,Ph.D. (11 June 2006)
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Lupus and its spectrum of disorders
- Fiona Woollard (13 June 2006)
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More about the Expert Patient Programme
- Joanne M Shaw (20 June 2006)
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The Unmet Psychological Needs of Those-Affected-By-SLE
- Rosalind M. Share (27 June 2006)
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A Sibling View on Lupus
- Tosha Gaines OTR/L (28 June 2006)
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Missing the paediatric diagnosis of systemic lupus erythematosus
- Stephen D Marks (4 July 2006)
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Nikola N Ilankovic, M.D.,Ph.D., Professor, Head University Clinical Center,YU-11000 BELGRADE, Pasterova 2
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Unfortunately, the syndromological approach and the symptomatic therapy of consequences (with general or universal drugs, "panacea") without etiological investigations, are the dominant trends in new unetiological, pharmacological medicine. "Systemic lupus erythematosus" and other so called "systemic", "autoimmune" diseases, are the best examples of unetiological medicine... The "explanation" of "autoimmunity" is similar to the "explanation" of "perpetum mobile", without any causes of disease and with application of universal (very dangerous) immunosuppresive therapy, independent from any well known etiological factors (1. Infections-focalosis! and systemic infections: Syphilis or Lues, now so called "Antiphopholipidal syndrome", TBC, Lyme, etc.; 2. Drugs and other chemical supstances, 3. Metabolic disturbances; 4. Physical damages and 5. All other etiological factors which can damage the tissue and provoke autoimmune reactions.) The basic principles in medicine must be furthermore: 1. PRIMUM NON NOCERE ! 2. THE THERAPY DEPENDS ON CAUSE/CAUSES OF ILLNESS ! If this basic approach in therapy is impossible, we are working temporary with symptomatic therapy, but with further diagnostic and etiological investigations to try to find any of the (curable) causes of illnesses. Competing interests: None declared |
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Fiona Woollard, Secretary YO24 1EP
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I can relate to the above and would reiterate the advice – don’t read anything that is over 6 years old! For a GP, putting the pieces together is part of a good clinical history – the patient may present with vague illnesses, overwhelming fatigue, strange rashes, dry eyes, infections, Raynauds, honeycomb rashes etc. There is a spectrum in this disorder. There is a risk of heart disease, miscarriage and deep vein thromobosis. One doesn’t know which organ the disease is attacking, a multi-discplinary approach is an essential to successful management. Cardiologists take note - lupus carries a risk of heart disease as does DiGeorge syndrome and perhaps heart murmurs shouldn't be dismissed as 'irrelevant'. For me, it has been a long haul including the overlooking of blood results consistent with DiGeorge syndrome for many years but the failure to recognise that I was indeed ill consistent with autoimmune disease. After extensive tests, I was diagnosed with mixed connective tissue disorder along with Sjogren’s. My illnesses were put down to the stress and anxiety of losing a child. The blood results were indeed obvious and neither could I have exaggerated or made any of them up including lymphopenia and leucoytopenia amongst others, they were supposed to be psychological in nature!!! A diagnosis of lupus should start at the very least with a DNA blood test. A positive diagnosis should indeed make the practitioner think that there are other things going on and then do further rheumatology tests on the back of those results. However I have friends that despite a positive diagnosis of DNA blood result still are not getting appropriate care – dismissed as ME, Chronic Fatigue. Further examples of essential resources are: Cruz P D, ‘Systemic Lupus Erythematosus” BMJ, Apr 2006; 332: 890 - 894 ; doi:10.1136/bmj.332.7546.89 Hughes, G Lupus, The Facts, (2000) Oxford University Press Shomon J ‘Living Well with Autoimmune Disease, What your doctor doesn’t tell you that you need to know’ (2002), Harper Collins Publications I would also urge a reading of lupus on www.emedicine.com. With thanks to a team of experts in Leeds of appropriate specialists and treatment – rheumatologist, immunologist, endocrinologist, dermatologist and numerous others, I am hoping that I can resume a more normal life and can resume working. However, one never knows what the future holds and one dreads the Winter returning, but stress is a trigger. The moral of the story is that the results of blood tests should not be dismissed or ancient articles on 22q11 deletion syndrome or lupus be read. Rare things can occur and I am just one of those people who has rare conditions and adults can and do have DiGeorge syndrome. Fiona Woollard Competing interests: None declared |
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Joanne M Shaw, Vice-Chairman, NHS Direct 207 Old Street, London, EC1V 9PS
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It was good to read how much Jane Robinson feels she benefitted from the Expert Patient Programme, an NHS self management programme to give people the skills, confidence, and knowledge to manage their conditions better and to be more in control of their lives. Any patient, carer or health prfessional who is interested in the programme or who wants to find local self-management courses, either to attend themselves or to which they can refer patients, should visit www.expertpatients.nhs.uk. Competing interests: None declared |
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Rosalind M. Share, Director: LUpus Patients Understanding & Support (LUPUS) http://www.lupus-support.org.uk
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A neglected aspect in the provision of overall care for lupus patients, is the psychological dimension. In any physical disease, there is always a psychological component and although the relationship between lupus and the psychological aspects is too complex to discuss here, it is important to acknowledge the meaning lupus has to the individual. Those-affected-by- lupus are "normal" people, who, because of the disease may become understandably depressed and anxious, as Professor David Isenberg points out: "The problem of attributing any neuropsychiatric sign or symptom to lupus is also illustrated by considering psychological features in patients with lupus, such as anxiety and depression. On balance in most cases they are morelikely to be secondary rather than due to primary effects. In other words it is hardly surprising that previously fit and healthy women who suffer from a condition that may substantially alter their appearance, induce a level of fatigue that defies most coping strategies, or be threatened with a life dependent upon a dialysis machine, become anxious and depressed — it could be argued that failure to become anxious and depressed in this situation might be a sign of CNS involvement!" (Isenberg, LUPUS, 1999, 8, pp. 1-2). Often, the individual's defence against their pain and their difficulties living with lupus becomes confused with their physical condition. Patients are treated physically, rather than psychologically. Those-affected-by- lupus need the opportunity to talk to someone who is able to appreciate, understand and work with some of the wide range of emotional problems. Our research indicates that individuals-affected-by-lupus need to be acknowledged as a whole person, rather than a collection of diseased body parts or viewed as a diagnostic problem in terms of unknown or uncertain aetiology. As Fiona Woollard poignantly writes, even trying to get a diagnosis can be long and arduous and this in itself, can be experienced as traumatic, particularly if individuals are disbelieved because they do not have positive blood tests. The psychological approach we suggest, is very different from viewing in the patient maladaptive thought or behaviour. Psychotherapeutic provision requires specific training in psychotherapy and this is very different from the important and necessary educationally based nurse counselling or the EPP; all three approaches need to be accessible to the individual-affected-by-lupus. LUpus Patients Understanding & Support (LUPUS) offers a range of free psychological support services to those affected by lupus, carers and families. Competing interests: None declared |
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Tosha Gaines OTR/L, Occupational Therapist The Bell Center 35209
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I really enjoyed reading this article. My younger brother was diagnosed with Lupus Fall of 2005. My brother went about 10 years undiagnosed and the time he was diagnosed, it had already attacked his heart, kidney, CNS, and lungs. I often wonder why this disease is so under diagnosed or recognized. He was 20 years old at that time. Currently, I serve as a community educator and support group leader to help me to cope with his Lupus. I have learned so much from the patients who are attending my support groups about how they are able to cope with life and this wolf. During my short reign with the battle against lupus, I have notice a lot of things that people often overlook. For one, people think you are fine just because you look good. Just because you don’t look like they are sick doesn’t mean that they are not sick. I can see him the toll Lupus has on him psychologically. Even though, he is a psychology major, he cannot accept his limitations. He is unable handle his stress, anger, and disappointments. At times, he loses his grip on life. He rather be dead than taking over 20 medications a day. He thinks that he is a burden, but I have to tell him that he isn’t. He thinks that he is going to die, BUT that is only God’s Will. These are things that are not addressed when it come to a person with Lupus. Competing interests: None declared |
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Stephen D Marks, Consultant Paediatric Nephrologist Department of Paediatric Nephrology, Great Ormond Street Hospital for Children, London WC1N 3JH
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Editor, I read with great interest the poignant account of a patient’s journey through the diagnosis and management of systemic lupus erythematosus (SLE) [1]. The author’s personal description of the unpredictable nature of this multi-system, autoimmune disorder was emotive with her honest report of both the medical and social aspects of her life with the protean manifestations of this episodic disease. However, it was disappointing to read that the diagnosis of SLE was missed in her case during her childhood for 15 years (with the onset of symptoms at 10 years of age and final diagnosis at 25 years of age). This should alert physicians to suspect the diagnosis of SLE, especially when her symptoms at onset were those typical of SLE with lethargy, rashes, joint pains, mouth ulcers and the development of possible arthralgia and/or myalgia at 19 years of age (when her general practitioner said this would probably progress to arthritis). Recently, it has been shown that the onset and progression of autoantibody development occurs before the clinical diagnosis with 88% of SLE patients having autoantibodies (including anti-nuclear antibody, anti-double-stranded DNA and anti-Smith) present up to 9.4 years before the diagnosis of SLE [2] with a proportion of this due to late presentation and/or diagnosis. Paediatric SLE is uncommon, with management predominantly by paediatric rheumatologists, nephrologists and other subspecialists in conjunction with primary and secondary care physicians. The minimum incidence of SLE in a paediatric population is 0.28 per 100,000 children at risk per year with a prevalence in children and adults from various epidemiological studies of 12.0 - 50.8 per 100,000 [3]. Although the author describes the wolf (Latin word for wolf is lupus) as a "demanding taskmaster", it was pleasing to hear that this can be alleviated with good professional and social support, including as she reports a good doctor-patient relationship, support groups with a strong family and friend infrastructure. In clinical practice, the involvement of a multi-disciplinary team approach to the management of these patients is paramount. References 1. Robinson J. The patient’s journey: systemic lupus erythematosus. BMJ 2006; 332(7554): 1374 - 1376. 2. Arbuckle MR, McClain MT, Rubertone MV, Scofield RH, Dennis GJ, James JA, Harley JB. Development of autoantibodies before the clinical onset of systemic lupus erythematosus. N Engl J Med 2003; 349(16): 1526 - 1533. 3. Malleson PN, Fung MY, Rosenberg AM. The incidence of pediatric rheumatic diseases: results from the Canadian Pediatric Rheumatology Association Disease Registry. J Rheumatol 1996; 23(11): 1981 - 1987. Competing interests: None declared |
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