A Systemic Lupus Erythematosus (SLE) diagnosis in January 2020 saw Anjeli Surujpaul, a University of Guyana student, having to make drastic changes to her life and she is now working to raise awareness about the autoimmune deficiency.
Surujpaul, 22, who had been dancing since she was eight years old, was forced to curtail this activity after she fell ill. “Before getting ill and before my diagnosis, I was a dancer. I also [did]… a lot of volunteer work with Dharmic, so I was out and about. I was a busybody basically, and then in September of 2019 I suddenly felt ill and everything changed. I wasn’t able to attend most of my classes,” she told the Sunday Stabroek.
In September 2019, Surujpaul visited a doctor at a private facility after she observed two bumps on her neck. The general practitioner, who prescribed antibiotics, told her it was an infection which the medication would treat. But then she got more bumps and other symptoms arose: fever, nausea, shortness of breath, hair loss and headaches. She returned to the doctor who referred her to another physician at the facility. This time, she said the doctor, an internal medicine specialist, diagnosed her with mononucleosis. According to the Mayo Clinic, mononucleosis is a virus that is picked up when people kiss or are exposed to it by sharing utensils with someone who has it.
Though Surujpaul’s symptoms were consistent with the disease, she said, “I was trying to figure out how I got mononucleosis. I was not aware how I would’ve gotten it. I was generally confused so in the back of my mind, I was like ‘oh I must’ve gotten it from some-body’s cup or something’”. But she became more ill, and in mid-October, while conversing with a friend who works at the George-town Public Hospital (GPH) the friend suggested that she get some tests done at the hospital. A doctor at the GPH then told her that it was likely an autoimmune condition.
Then in December she decided to take a break from school because she had started feeling better and it was approved for her to travel.
“I had probably gone through like four to five rounds of antibiotics, up until December when I went abroad. I was feeling a bit better and so the doctor at the private hospital told me that nothing was wrong with me and that I was fine. But at this point I was having intense joint pain and my hair was falling out in clumps. I was getting rashes on my skin. I had no energy to do anything. But he kept telling me that nothing was wrong,” the young woman explained.
Surujpaul said that she had expected to return to Guyana in January but she became ill and was admitted to a hospital abroad. She explained that the vomiting returned and the joint pains were so excruciating she had to stay in one position for the entire day and even then it was just as bad as if she had been moving. People around her insisted that she could not travel home in this state and took her to a hospital where she was admitted. But again, doctors did not know the cause of her symptoms. Surujpaul said the doctors were running multiple tests but coming up with no solutions.
“One doctor even came up to me and told me that I was a mystery because I was there for like four days in and they had no idea what was wrong with me. All they knew was that I was sick, but they just couldn’t tell what was wrong,” she recalled. She said that on the fifth day at the hospital, she was referred to a rheumatologist who had been presented with the test results and diagnosed her with SLE.
The Mayo Clinic states that lupus is a disease that occurs when the body’s immune system attacks its own tissues and organs. It is an autoimmune disease, just as the doctor at the GPH had suggested. Lupus can be difficult to diagnose because its signs and symptoms often mimic other ailments.
Surujpaul said she had already done her research on the condition because of her discussion with the doctor at the GPH, but noted that since she did not have the most distinctive sign of lupus, a facial rash that resembles the wings of a butterfly unfolding across both cheeks, she had ruled it out.
“When they told me I was kind of heartbroken to be honest but also, I was kind of relieved because for months and months and months they didn’t know what was wrong with me. I couldn’t get any treatment because they didn’t know if they would trigger something else,” she said. “I was sad that it was something I would have to live with, but I was relieved that they knew what was wrong with me and I could get treatment.”
Surujpaul told Sunday Stabroek that since being diagnosed her diet has changed because certain foods can trigger a response. She explained that she is now lactose intolerant. She added that she has gone through several allergies which meant that she had to avoid consuming certain foods. Surujpaul now avoids processed meats, fried meats and gluten. But she said that living in a Guyanese household and avoiding gluten is a challenge in itself. She also explained that her usual way of planning her day ahead is now limited because she can never tell how she will feel. She said that one day she would be feeling well and then the next day she could feel ill and have to stay in bed all day.
She also can no longer dance because of the immense pain. She said that she has not danced since August 2019. “I have intense joint pain sometimes. It’s just really hard and fatiguing,” she said. But she is positive that she will be able to return to the stage at some point.
Currently, Surujpaul is prioritizing her studies and living with lupus. She has the support of her family and friends. With the autoimmune condition, she is more prone to infections which is why her family has given her her own space at home so that she can be healthy. She said that she easily caught pneumonia after a classmate had a cold and with the COVID-19 pandemic her family and friends are more careful around her.
Two of her friends have joined her to bring awareness to the Guyanese public by starting the Lupus Foundation of Guyana. Surujpaul hopes through the foundation to be able to provide financial and emotional support for lupus patients in the future. Information about the foundation is available at https://www. facebook.com/thelupusfoundationgy or https://www.instagram.com/thelupusfoundationgy/. In the meantime, Surujpaul is a part of a 13-person support group.
In addition, Surujpaul wants the general public to be aware of the aid that is provided by the GPH clinic. She explained that the people she has talked to who have lupus were not aware of the clinic and had been paying for doctors’ appointments at private facilities. She is aware of how expensive these visits can be and for this reason she is advising other autoimmune deficiency patients and people who might have similar symptoms to visit the GPH clinic. “I know that a lot of people don’t want to go to GPH, but so far my experience at GPH has been all good. The doctors listen to me about my symptoms and take everything that I say seriously,” she said.
