Rajesh Chaudhary, aged 33, is a husband and father who works as a Deputy Mamlatdar in Gujarat. He is a sickle cell warrior and does not allow his condition to limit him from achieving his goals. Diagnosed with sickle cell anemia at the age of 8, he discusses the challenges he has faced due to the condition and how he manages them on a daily basis.
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Please share your journey which lead to the diagnosis.
Even though I lived in an area where sickle cell anemia is common, my parents did not suspect it at first. As a child, I often had trouble breathing and felt weak when I played or did normal things. I was prescribed folic acid syrup, but my hemoglobin did not improve. I had to get a blood transfusion every year. Our doctor said it was because my immune system was weak, and I was underweight.
When I was 8 years old, I got very sick in the summer. I had intense fever along with abdominal pain, and joint pain. The doctor initially thought it might be Chikungunya. Due to abdominal pain, he suggested an ultrasound, which showed swelling in my liver. That’s when they thought to check for sickle cell anemia, and that’s how we found out. We later learned that my father carries the gene for sickle cell anemia. Luckily, my sister doesn’t have it. -
What was your reaction to the diagnosis?
Initially, my parents did not inform me about it even though sickle cell disease is endemic in my community. Not everyone talks about it openly. My mother took the lead in informing me about this. She stressed the importance of being cautious and following medicines strictly. When I found out I had sickle cell anemia, I was surprised but also worried. I was mostly concerned about my studies because I thought, I might have to stay at home more. It was a lot to handle at that age, but my parents’ support helped me adapt and manage my condition effectively. I focused on furthering my education, and after graduating, I passed the government exam on my first attempt. That achievement meant a lot to everyone who was part of it.
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Can you talk about some of the challenges you have faced?
Living with sickle cell anemia has been quite challenging for me. Growing up with this condition was not easy. I often experienced severe pain in my chest, back, and extremities, which also affected my sleep. I felt disappointed because I could not participate in extracurricular activities such as basketball, football, and karate due to the risk of breathing difficulties. I had to undergo frequent hospitalization compared to my other friends and their teasing affected me psychologically in my adolescent age. Before going on vacations, my parents always had to check the weather, travel conditions, and the availability of hospitals, as anything could trigger my pain. However, their endless support kept me motivated.
I also want to mention that my wife and I were a bit scared about our child possibly developing sickle cell anemia. Thankfully, our daughter doesn’t have it. But that phase was difficult for me because I did not want my child to face what I did. Fortunately, my wife and daughter understand and support me in everything. I thank God for giving me the strength to fight this situation.
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What medications are you currently taking, and what precautions do you have to follow?
I take hydroxyurea and folic acid daily. Initially at young age I experienced constipation and bloating sometimes, but now I don’t have any side effects. As I have grown older, my hemoglobin levels have improved and the frequency of blood transfusions has also decreased. My hemoglobin is now in the normal range. In the summer, I am prone to getting fever easily, so I take extra care of myself and stay hydrated while minimizing travel. I feel more muscle pain in the winter. So, I prefer doing more stretching exercises during that time.
To manage my condition, I have made certain lifestyle adjustments. I avoid fried foods and prefer homemade meals. I also limit my intake of citrus foods because I easily develop rashes or inflammation. I don’t consume tamarind-based products. Heavy exercises are not recommended for me. I can’t stay in sunlight more as it can lead to dehydration. I walk 3 km daily with breaks to prevent fatigue. Yoga and meditation have been very helpful in coping with my condition, benefiting both my physical and emotional well-being. I am always grateful to God for keeping me safe and giving me the strength to fight against this disease.
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How do you handle your work? Have you informed your workplace about your condition?
Yes, everyone is aware of my condition. Since my post does not have fixed duty hours, I have informed my officer and team about my sickle cell anemia. They make sure I can do my work well, even with my condition. I take necessary precautions to maintain my health while fulfilling my responsibilities. This includes taking breaks when needed and prioritizing tasks effectively.
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Your advice to others who are fighting the same fight.
First and foremost, I would advise not to hide it and not to consider it as a stigma. Raising awareness and educating others about sickle cell disease is crucial. Your story can inspire others to live another day. So never feel ashamed. I keep sharing this in our social gatherings. I request parents to never impose education related limits on children with sickle cell disease. They have the right to pursue their dreams. With a positive mindset, we can overcome any challenge. Maintaining positivity and having faith in yourself will always give you strength.
The most important thing is to get tested on time.
