Nephrology Care in Challenging Circumstances: A Patient's Perspective

Rasha Raslan
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In this special section of Kidney News, you will read about the intersection of nephrology and a spectrum of disasters, ranging from hurricanes and tornadoes to modern-day warfare. We hope you gain insight into the mounting challenges that the nephrology workforce faces all around the world. We will share countless statistics and ongoing efforts that are being made to address these hurdles. But amidst all of these challenges, we must not lose sight of our primary focus: our patients. True progress can only be made with them at the forefront, and it is imperative that we remain their unwavering advocates and provide them with platforms to voice their concerns and aspirations.

Below is an excerpt of an interview I conducted with one of my clinic patients, a young Syrian refugee with lupus nephritis who recently relocated to the United States from Türkiye (formerly Turkey).

This interview was originally conducted in Arabic and has been translated to English. Permission to publish this interview was obtained.

Q: How old were you when you were diagnosed with lupus?

A: I was 9 years old. My younger sister was diagnosed at an even younger age, and my older brother was diagnosed after I [was]. Unfortunately, he passed away from complications of lupus as a teenager.

Q: Describe the start of the war in Syria and how that impacted your life.

A: The war broke out in 2011, when I was 12 years old. In the first few months, it did not affect my family, as the war was mostly concentrated around the city of Homs. Eventually, the war reached my village. We then had to leave home and move to the city of Aleppo (the biggest city near us), where we were homeless and sheltered in abandoned schools. We had no electricity or clean water. We then eventually moved back to our village around 6 months later, although it was not very safe there.

Q: Describe your access to medical care before and after the war.

A: I used to see a nephrologist, but he left soon after the war broke out; I think he moved to the United States. Prior to the war, I had no issues [in] obtaining my medications. These included prednisone, methotrexate, and hydroxychloroquine. After the war broke out, it became much harder. The cost became much higher as well. Since we lived in the rebel-controlled areas, medications were scarce. My father used to make routine trips to Aleppo, which was under government control at the time, to buy them. It was during one of those trips that he was arrested and later killed. When I ran out of medications, my symptoms, such as rash and hematuria, flared again.

Q: You eventually left Syria and moved to Türkiye. How was your medical care there?

A: My family and I moved to Kilis, Türkiye, as refugees in 2013. I was not able to see a nephrologist there due to long wait times, but I was able to see a dermatologist who prescribed my lupus medications. By then, [the physician] started me on monthly rituximab infusions, which I kept receiving until moving to the United States. Medications were expensive there, but the local pharmacist understood our situation and allowed us to pay in installments. We did not receive much aid from NGOs [non-governmental organizations] but could rely on the local Red Crescent Society [International Federation of Red Cross and Red Crescent Societies] for occasional financial help and assistance in obtaining identification, which would allow us to work.

Q: Is there anything else you would like our readers to know about your experience?

A: Life was very difficult during our time in Türkiye, although we were safer there than in Syria. It's been an adjustment living in the United States, but we are slowly getting used to it. We have no problem obtaining our medications here. But in my opinion, the best thing about living in North Carolina has been the weather and our ability to have access to air conditioning during the summer and heating during the winter.