By Shaba Manzoor and Nuzhat Khan
At the age of two and a half years, Swaleha Naaz Khan fell down the stairs while playing and broke her hand. This incident marked the first time she visited a hospital. However, for Khan, a patient of Sickle cell disease, it set off a cycle of sickness, incorrect medications, hospital visits, and unsuccessful treatment. Now at 26, she recently completed her M.Sc (Masters in Science) in Computer Science from a private institute in Chhindwara, Madhya Pradesh and helps people fight suffering from Sickle cell disease in this small town of Madhya Pradesh.
Facing Problems in Identifying the Disease
Growing up, she constantly experienced severe body pain. Due to a limited medical infrastructure in the city at that time, doctors were unable to identify the source of her pain. Her body would frequently stiffen, prompting her father to assume she was possessed by a spirit or djinn. They sought help from hakims and babas in hopes of finding an explanation for her pain but to no avail. Khan and her family went from city to city in order to get her treated. They even travelled to Nagpur in Maharashtra for this purpose.
Dr. Shrivastav, a doctor at the city government hospital, finally diagnosed Khan with sickle cell disease while she was in 10th grade, after she was brought to the hospital the night before her board exams. “It was for the first time that I received correct treatment,” she went on to say.
The Disease Affected Khan’s Education
Previously, whenever Khan’s condition deteriorated, she was given injections to soothe her unbearable pain. “The injections were given every 8 days, causing me so much pain that I could only sleep on one side. I couldn’t sit down properly. My education was also greatly affected. I often had to miss school,” she explained. Due to being admitted a day before exams, she flunked in 10th grade.
Sickle cell disease [SCD] is a hereditary medical condition that persists throughout a person’s life and affects red blood cells, which in turn impacts hemoglobin – the carrier of oxygen in the body.
Unlike the typical disc-shaped red blood cells found in a healthy person, in SCD, these cells take on a crescent or “sickle” shape. The alteration affects their manoeuvrability in blood vessels, leading to a range of complications such as strokes, vision issues, infections, and bouts of intense pain known as pain crises.
According to Gautam Dongre, Secretary of National Alliance of Sickle Cell Organisations (NASCO), sickle cell disease can cause great damage to people’s lives. “Without accurate diagnosis, individuals with this condition may not live more than 4 years. They can be affected by organ damage within 20 years. Their joints may stop functioning properly, potentially leading to disability. In the absence of proper treatment, it can result in premature death. Otherwise, their entire life may be centered around going between the hospital and home,” said Dongre stressing that timely treatment of the disease is extremely critical.
Creating a WhatsApp Group of Sickle Cell Patients To Help Them
Khan was admitted in 2016, along with two other SCD patients, Deepika and Aishwarya. She had previously thought she was the lone patient suffering from the disease. However, she began to meet more people suffering from the disease. “Aishwarya formed a group of all Chhindwara’s sickle cell patients. We discovered that there are numerous patients with SCD in that district. At the time, we were only 15-16 years old,” she explained.
After she discovered more than 500 SCD patients in Chhindwara, Khan decided to visit the District Magistrate’s office in order to demand a separate hospital ward for them. She says that when she used to visit the government hospital, they had to purchase everything from outside. The only thing they provided was a bed, which was free. She observed that patients coming from remote villages faced several difficulties in accessing proper healthcare due to this.
“We demanded for all patients to get access to Dr. Shrivastav. After that, we asked for the availability of medicines. The whole process was really taxing. After going through several offices and facing rejections, medicines were finally made available in the hospital for free. Rarely does anyone need to purchase something from their own pockets,” Khan stated, proudly.
‘Cared for Me as if I Were Her Own Sister’: A Sickle Patient
22-year-old Nazrana Mansuri, a patient suffering from Sickle Cell Disease (SCD) in Chhindwara, recounted her first meeting with Khan at the hospital. Upon learning that Mansuri is an orphan, Khan assumed full responsibility for her operation. “I used to live with my khala (aunt), who worked as a daily wage earner and didn’t have the means to look after me. Swaleha took all my responsibilities. Despite being unwell herself, she stayed with me throughout the night of the operation. She not only brought me food but also cared for me as if I were her own sister. It’s been two years since my operation, and she still feels like family to me,” Mansuri said.
How Extreme Weather Made Khan’s Condition Worse
Khan said that during wintertime, her blood vessels used to thicken causing her extreme pain.
Dr. Gaurav Kharya, the clinical lead at the Centre for Bone Marrow Transplant and Cellular Therapy, Indraprastha Apollo Hospital, New Delhi, explained that under normal circumstances, sickle cell disease may not pose a problem. However, during hot weather when dehydration occurs, and in extremely cold temperatures when small blood vessels constrict, a crisis can occur. During these episodes, the shape of sickle-shaped cells can become further distorted and obstruct various blood vessels, resulting in the typical symptoms of sickle cell disease.
In 2020, Khan joined the National Alliance of Sickle Cell Organisations (NASCO), after meeting Gautam Dongre. Today, she manages all of NASCO’s work in Madhya Pradesh and helps out hundreds of patients of the sickle cell disease with getting them treatment, diagnosis and recovery.
Shaba Manzoor and Nuzhat Khan are independent reporters based in New Delhi, India.