Symptoms of chronic disease that 'takes six years to diagnose'

One in 1,000 people have lupus in the UK, with 90% of cases seen in women. Despite this, the current average time for diagnosis from the offset of symptoms is 6.4 years, according to one expert.

Pooja Gadhia, litigation executive at Patient Claim Line, has shared what lupus is and what to do if you have been misdiagnosed, having received a diagnosis for the condition herself.

She said: “I was diagnosed with lupus around six years ago, but had been suffering with a range of problems for a really long time. The diagnosis took a really long time, but once diagnosed and on the correct medication, my health has improved dramatically.”

What is lupus and its symptoms?

Pooja said: “Lupus is a chronic autoimmune disease in which the body’s immune system mistakenly attacks healthy body parts and, in turn, causes inflammation. There are varying degrees of lupus, and it can show in many forms, which is why it is mistaken for other conditions. Just a few of my symptoms included photosensitivity, swollen joints, kidney pain, fatigue, facial rash, headaches and digestive problems.”

What causes lupus?

Pooja said: “No one knows how or what causes lupus, but potential triggers include having a severe infection which can initiate the disease, certain medications or too much exposure to sunlight. In my case, I already have some other autoimmune conditions so this made me more susceptible to the condition.”

What is it like living with lupus?

Pooja said: “During the first few years, I was constantly poorly. I used to get really bad kidney infections, including kidney stones, and had severe asthma attacks. I was diagnosed with many other conditions, before I got to the bottom of everything. When my lupus was really bad, there were days that I couldn’t get out of bed, because my body hurt so much and I just didn’t have the energy.”

“After being diagnosed, my health changed significantly. I was prescribed Methotrexate, which is a low-dose chemotherapy drug, which dampens the immune system. This meant that my body stopped attacking itself altogether. I am happy to say that I am currently in remission, and completely lowered the dose of the drugs that I take, and I lead a normal lifestyle now.”

How is lupus treated?

Pooja said: “There are various treatments for lupus, including antimalarial drugs, corticosteroids and immunosuppressants. Your consultant will decide on the best course of action to treat your lupus.”

What complications can lupus cause?

Pooja said: “Lupus affects many parts of the body, mainly the kidneys. It could cause kidney failure in extreme cases, but also affects the lining of the lungs, heart and blood vessels.”