Nahed ElSayed, a 47-year-old Egyptian journalist, was diagnosed with lupus erythematosus, which affected her kidneys. She recounts her painful journey of being wrongly diagnosed initially and how after an emergency hospitalisation, the right diagnosis put her back on the path of recovery.

What was your diagnosis, and can you briefly describe the treatment you have received?

Living with this disease has been difficult, especially since I was not diagnosed correctly at first. My pain was all limited to the joints and bones, so the diagnosis was rheumatoid. However, later on, the disease got worse with swelling in my feet.

What have been the most challenging aspects of being diagnosed and living with kidney disease?

I received anti-inflammatory treatment for rheumatoid, and my pain got worse. My kidneys were further damaged, kidney function decreased, I had a generalized overload, and my lungs filled with water.

 How do/did you manage or cope with these challenges?

No one found out I was a kidney patient until my body was swollen and I weighed 90 kilograms. Only then a kidney biopsy was done and the extent of my kidney failure discovered.

What are the most important learnings in your journey with kidney disease?

What do you think are the more important things that can help patients to live well with kidney disease?

In my case, I reached the point of needing a transplant. At the same time, I was suffering from an immune system deficiency. Therefore, my body would not have accepted any foreign entities. Immunomodulators and steroids did not prevent the pain and attacks of the disease.

What sorts of things would you suggest helping patients become better empowered and be in more control of their health/life?

I underwent a monthly stem cell transfusion treatment. I began to gradually regain my life, starting with new hair growth, skin improvement, and improvement of my kidney function in removing water from my body.

What are your hopes and fears for the future concerning your disease and your life in general? Are you hopeful that you will be okay?

I hope my current treatment will continue, as it has been a solution to my extremely sick condition and has restored my health.

What is something you wish people knew about living with kidney disease?

I hope that every patient will find the appropriate treatment at the right time. The earlier the disease is diagnosed and the faster the treatment commences, the better the chances of recovery.