Study Shows Shocking Amount of Lupus Misdiagnoses

Lupus is a serious autoimmune disease that changes lives due to its debilitating psychologically and physically distressing symptoms. The condition affects approximately 1.5 million Americans, 90 percent of which are women, and while the disease has proven to be quite harmful with adverse manifestations, misdiagnoses of the symptoms are also an issue that is affecting the lives of many other people.

Lupus is a critical disease with a varying number of symptoms that may resemble and can be likened to the symptoms of other non-lupus related diseases, making it harder to diagnose. The manifestations of lupus are usually active and relapsing and have been the subject of a significant number of confused and incorrect diagnoses. An extensive research study carried out by a Lupus foundation showed that over 46.5 percent of the participants in a 3000-adult survey reported a misdiagnosis of their condition with something other than lupus. In addition, more than fifty percent (54.1%) disclosed that initial responses from healthcare providers disclosed their symptoms to be non-existent or simply psychological.  

The data obtained was included in a cross-sectional study titled “Lupus Diagnosis: Process and Patient experience”, which was released at the American College of Rheumatology (ACR) by the Lupus Foundation of America, and the findings aim to implicate the urgent need for a shorter and more accurate diagnosis in order to aid people with lupus to begin critical treatment that may significantly reduce the chances of resulting damage to critical organs such as the kidneys, lungs, brain and heart.

Later studies have shown that it can take up to 6 years for people to receive a correct diagnosis from the time of onset of lupus symptoms. The many damages that can be caused by Lupus on vital organs in both short and long term thus requires a diagnostic procedure that is more effective and accurate, which has made the Lupus Foundation of America highlight this aspect as an important strategic objective.

The Director of Research at the Lupus Foundation of America, R. Paola Daly has said that the study and investigations for proper and accurate diagnosis systems is highly valuable as it is the first in-depth evaluation of the patient diagnostic experience. Paola explained that the result of the studies obtained will aid and buttress understanding and subsequently prevent the specificities that often cause unacceptable delays in obtaining a proper lupus diagnosis. The Lupus foundation of America through this study seeks to identify the barriers that currently challenge the lupus diagnosis as well as many improved ways to obtain accurate diagnostics. There are nearly 40 percent of people who have lupus who were forced to wait for more than 12 months from the onset of their symptoms to the receive proper diagnosis, in which time, the disease may have advanced or accelerated without proper and clearly defined treatment options.

Why do misdiagnoses of lupus happen?

These statistics underscore the imperative of providing continued medical education and enlightenment about lupus and its symptoms to both private, government, primary and special healthcare providers. The premise for misdiagnosis, as unwanted as it may be, isn’t far-fetched; lupus bears symptoms that resemble the symptoms of other similarly related non-lupus conditions. Several conditions may be mistaken for lupus and vice versa, and while they may share some of the symptoms, none share all the symptoms of lupus. It may seem rather easy to distinguish on paper but bearing in mind that no two cases of lupus are ever the same and the manifestations of the symptoms of lupus are not always the same and may vary from patient to patient, as one can see why the symptoms of Patient A’s lupus may be confused with other diseases such as fibromyalgia or rheumatoid arthritis.   

In rheumatoid arthritis for example, the symptoms of the disease onsets with joint pain and swelling, and fibromyalgia begins with joint pain and fatigue, all of which are symptoms common to lupus. As the condition progresses however, people with lupus may develop skin rashes (a butterfly shaped rash that appears on either cheek of the patient that usually defines lupus) or symptoms in vital organs such as the kidneys, lungs, heart or hematologic systems. Patients with lupus will also test positive and be identified by antibodies produced by the body’s immune system.

Other diseases may also have similar symptoms including regular arthritis, which embodies joint pain and restricted movement. Fibromyalgia also causes chronic fatigue; body pains and stiffness and inflammation of the kidney may be attributed to Glomerulonephritis. In Sjogren’s syndrome, there may be dry eyes and dry mouth symptoms while vasculitis involves inflammation of the blood vessels.  Some other typical misdiagnoses are included below:

• Loss of weight, swollen lymph glands and fever that is associated with lupus may be misdiagnosed as cancer
• Exhaustion and chronic fatigue associated with lupus may be misdiagnosed as being caused by anemia, diabetes or fibromyalgia.
• Joint pain and inflammations associated with lupus may be misdiagnosed as arthritis
• Mastitis found in a lupus patient may be wrongfully diagnosed as a breast tumor
• Epilepsy or schizophrenia may be diagnosed in cases where neurological symptoms are actually caused by lupus
• Movement disorders related to the neurological symptoms of lupus may be classified as Parkinson’s disease
• Chronic organic encephalopathy associated with lupus may be attributed to degenerative dementia
• Reduction in the white blood cell count or thrombocyte count may be wrongly diagnosed as cases of leukemia or SLE

The failure to correctly diagnose Lupus or its misdiagnoses may be attributed or associated with the following:

• The ability of the symptoms of lupus to become relapsed or enter periods of remission where the symptoms temporarily disappear can cause misdiagnosis
• Symptoms of lupus has also been known to mimic the symptoms of other illnesses
• There is currently no conclusive test for the lupus condition that can diagnose lupus and produce unambiguous results, which means that testing may take months or even years to obtain an accurate diagnosis. 
• If the condition is co-existing with other autoimmune conditions such as rheumatoid arthritis, diagnoses may be significantly more challenging due to the overlapping symptoms
• The manifestations of lupus symptoms vary among patients with some being mild while others take on aggressive forms
• The most definitive form of the Lupus condition is the butterfly-shaped rash. This rash only appears in 1/3^rd of the case of Lupus and many health professionals will not consider systemic lupus erythematosus if this rash is absent
• Systemic lupus erythematosus is wrongly considered as an adult disease and it is not evaluated as a likelihood in children
• Fatigue and malaise in children is often misinterpreted as just tiredness or mild exhaustion
• Symptoms of lupus are very widespread and may affect several parts of the body, which makes it quite challenging to understand

There are other reasons that can be pinned as causes of lupus misdiagnoses, but it is highly important that the right set of measures are being researched and developed to obtain accurate evaluation. Delayed diagnosis of lupus has many adverse effects and may lead to the further damage of critical organs in the body.