Hemant, 28 from Betul, Madhya Pradesh describes his journey living with Sickle Cell Disease and how it has affected his study, his work, and his relationships. He also shares tips on managing day to day issues and seasonal changes.
When were you diagnosed?
I found out about my illness in September 2023.
How did the diagnosis come about? Initial signs/symptoms? When did you notice the initial symptoms?
The initial symptoms were pain in the hands, rise in bilirubin leading to jaundice. There was also fever and overall weakness. I cannot confirm but I had the pain since when I was a child, maybe since when I was 5-6 years old.
What tests were done at the time?
Tests that were done were Complete Blood Count, Lung Function test (LFT), Kidney Function Test (KFT) and HPLC (High Performance Liquid Chromatography – a blood test).
What is your family history of Sickle Cell?
Was not aware of any family history for Sickle Cell, but when I was diagnosed with Sickle Cell, doctor advised us to get a HPLC test done for my mother and father. Their report indicated that they had traits of Sickle Cell.
When you were finally diagnosed what did you feel? What did you think the pain was due to before diagnosis?
We were very worried when I was last diagnosed and before I understood details about this illness. Whenever I experienced pain I always had one thought - Why me? What was the reason for this repeated and very severe pain? My parents took me to the local doctor and I was prescribed pain killers which help ease the pain in 1-2 days and then there was no problem for 1-2 months. But again the pain came back and there was no proper diagnosis of the sickness or treatment for the same. Later when I fell really sick and had to be hospitalised and given treatment and doctor suggested certain tests like HPLC and other test, the reports revealed about this illness. When I heard about this both me and my parents were very scared about what this illness was and how it caused so much pain. Later the doctor prescribed certain medications and when I started taking these properly I had no more of the pain crisis and felt better. I started getting interested in other activities and work. I then researched on Google and YouTube about this illness and got some more information which helped me begin to understand details about this illness and also helped me and my parents accept my condition, manage and take care of myself better.
Only after I got details and knowledge on this illness, I realised this is a genetic condition. Only after this I connected with NASCO and Gautam Dongre ji and got to know about many others including children suffering from this illness and that their parents were also troubled. After this I got involved with NASCO and started helping out with social service.
What treatment are you on? What pills including supplements do you take daily?
Based on the advice by the hematologist, I get a CBC, LFT and KFT done every 2-3 months and after I show the report, the hematologist advises me to take Hydroxyurea, Folic acid and Calcium tablets. I am currently following the hematologist’s advice.
What does a typical day look like for you living with sickle cell disease?
Due to Sickle cell, I cannot take up any strenuous work, daily have slight pain continuously in my hands and some or the other part of the body. I also feel tired very easily doing any kind of work. This is how I go through each day.
What are some of the biggest challenges you face on a regular basis?
On a regular basis, I face many challenges like not being able to do any strenuous work, feeling tired very quickly doing my routine work. I experience pain in some or the other part of my body, have continuous slight pain in my hands. Also at times I even experience pain in my chest while sleeping. These are some of the challenges I face.
How do pain episodes (crises) affect your routine, work, or studies?
I cannot work due to pain and feel tired really quickly. I cannot study well due to this and also find it hard to remember all that I have managed to study. Even at home when my parents ask me to do some work, I tend to remember only some and forget the rest of the tasks.
How has living with sickle cell disease impacted your mental or emotional health?
Due to Sickle Cell disease, I face a lot of difficulties - I think a lot about anything I have to do - about what should I do, how will I do it, by when will I be able to do it, and alongside I also forget a lot of things.
What coping strategies or support systems have helped you the most?
In this situation, I have got a lot of help from my parents. Whenever I think and worry about my illness, my parents pay a lot of attention to me and what I have to say. They try and give me solace, advice me to accept whatever the situation is, now that it has been diagnosed and not worry too much about my illness, to do what is possible. They take control of the situation whenever I have a crisis. My parents are a big support in my life.
How has the condition affected your relationships with family, friends, or partners?
Due to this illness, I cannot go anywhere, or travel, as I can go into crisis any time. In my family it is only my parents who understand and take care of me, no one else. There are some friends who understand me and comfort me. Rest of my friends do not want to understand me and just leave me even when there is a need. This is how this condition has affected my life.
Has sickle cell disease influenced your education or career?
I am not able to carry on my studies effectively due to this condition and whenever I try to study, due to a crisis I am not able to focus on my studies and not able to remember certain things. Yet I was able to complete my studies. However, due to this illness, I am not able to progress in my career and I keep worrying about it a lot.
What advice would you give to others with Sickle cell?
My advice to all other fellow Sickle Cell disease sufferers is to contact a hematologist at the earliest, and as per their advice get CBC, LFT and KFT tests done every 2-3 months, show the report to the hematologist, so that they can prescribe the appropriate medication. Consume the medication as per the hematologist’s advice, so that they can avoid any pain or crisis. Take good care of themselves, especially during monsoon and winter because due to changes in weather, humidity, reduction in temperature, the Red Blood Cells (RBCs) of individuals with Sickle Cell Disease (SCD) get compressed. Due to this, RBCs become sickle or cashew shaped, sticking to each other and stopping blood flow and this increases the chances of severe pain crisis. Also SCD patients have low immunity, which increases their chances of catching cold, cough and pneumonia. Even a small infection can get really serious for SCD individuals.
Avoid or consume minimum fast food. Keep in touch with other Sickle Cell patients so that they can get advice, information and guidance from them.
