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Late Diagnosis of Rare Diseases Adds To the Disease Burden

by Karishma Abhishek on February 20, 2021 at 11:56 PM

Diagnosis of lupus nephritis is often delayed with more than 60% of diagnosed prevalent cases of lupus nephritis seen in class IV and V in the UK as per the GlobalData, a leading data and analytics company.


"This could be due to an initial misdiagnosis of the disease, which results in late diagnosis or treatment beginning at a more advanced stage. According to GlobalData, diagnosed cases are increasing annually in the UK, with an annual growth rate (AGR) of 0.47% highlighting the importance for an increase in awareness", says Nneoma Okeke, Epidemiologist at GlobalData.

‘Diagnosis of lupus nephritis is often delayed with more than 60% of diagnosed prevalent cases of lupus nephritis seen in later stages � class IV and V in the UK. Thus increased awareness of these rare diseases may help in developing prompt diagnosis and treatment strategies that would improve the quality of life in affected individuals.’

Lupus nephritis is the inflammation of the kidney that is caused due to a rare autoimmune disease called systemic lupus erythematous (SLE). It is characterized by the body's immune system attacking its body tissues - kidneys in case of lupus nephritis.

Common symptoms of lupus nephritis include foamy urine, edema (swelling due to excess body fluid) in the legs, feet, or ankles, and less often in the hands or face, and high blood pressure.

Rare diseases affect millions of people worldwide and around 300 million people worldwide are affected by 6,000 identified rare diseases. Although most of these rare diseases are due to genetic predisposition, almost 30% result due to infections, allergies, and other environmental causes.

"Rare diseases such as lupus nephritis are continually being discovered. As such, COVID-19 could play a role in the development of a new rare disease. While the COVID-19 pandemic is still ongoing, it is difficult to predict what residual effects will be seen in populations affected by the virus. However, there have already been reports of 'long COVID-19', where symptoms persist for over three months after a patient is diagnosed. Those with long COVID-19 will need to be monitored and evaluated further to get a better understanding of this disease, which may evolve into rare disease, " says Okeke.

The present data thus portrays the fact that increased awareness of the rare diseases may help in developing prompt diagnosis and treatment strategies that would improve the quality of life in affected individuals.

Quick Stats on Lupus Nephritis

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