I, Gowthami Singiri from Nellore, Andhra Pradesh, have been fighting with Systemic Sclerosis with SLE overlap for the past 7 years.

Here is my story….

It took me six months to get a diagnosis after my symptoms started, and it was an arduous journey. I became weak, struggled to walk, developed a salt-and-pepper skin tone, had a brain stroke, and my fingers began to deform. Depression drained me. I remember one day calling my doctor in tears, pleading that I didn’t want to lose my finger and hoping for another treatment option, but unfortunately, it was removed. Even simple movements were painful, and eating felt like a struggle. I discovered I had lymph node TB and nerve damage. The rheumatic disease caused pain throughout my body. My doctor tried everything possible to help me find relief, but sadly, my condition progressed rapidly.

I studied PGDM finance and questioned whether I deserved to depend on others for money. My right hand and mouth are still functioning, right? Despite these challenges, I launched my own online saree business while being bedridden, which allowed me to earn money for my treatments (physiotherapy, tests, hospitalizations) and also support my family. I became an entrepreneur, which helped me move away from depression; I focused on work. I needed money to recover, so I didn’t have to rely on my parents. When doctors told me there was no cure, I refused to accept that. I always believed I could find a cure. I understand that eating habits do wonders. I stopped consuming salt for six months, and my salt-and-pepper pigmentation improved by 95%. However, no creams helped me remove it. It helped reduce inflammation. I started physiotherapy and massage therapy, which helped me regain the ability to walk again. However, I still couldn’t do the things I used to, like walking, climbing, running, or dancing.

One day, I found out I had developed ILD. I asked my doctor about a stem cell transplant. He said it was in the trial phase. I thought, why can’t I participate in that trial? Life is short. If it fails, it takes one life; many lives will change if it cures. I decided to go for the stem-cell treatment. Then I proceeded to the concerned centre and underwent a complete body test; the doctor said my heart rate was high, but the other parts were fine. Then I said to the doctor I want to do or die. I couldn’t live in this pain forever. So the doctor agreed to help me because he saw my determination.

After tests were clear, my journey began with 5 days of stem cell injections in the morning and evening in OP. On the 6^thday, I was admitted to the hospital, and they took two units of blood from me and sent them for stem-cell purification. Unfortunately, I  tested COVID-19 positive. But it turned out to be a blessing as I developed new antibodies. Again, after 14 days of battling COVID-19, I was re-admitted. They started me on three types of chemotherapy for 6 days(ATG, cyclophosphamide and Rituximab).On the 8^th day, I received my stem cells back. I ended up staying in a hospital for a month, during which I was given antivirals, antibiotics, antifungals and until my WBC count began to rise.

Honestly, the pain from the transplant was mild compared to what I experienced before. I had to shave my head, but that was fine because I knew it would grow back. It already reduced my pain by 70% in the first week. My hard skin started to soften. My old inflammation and body tan began to fade; I regained my appetite and asked my mom for food. No one believed I could walk, dance, climb, or jump again. Now I’m doing all that; it’s a massive thing for me and my family. When I returned to the hospital for my second visit after the transplant, the doctor was pleased to see me walking independently, and the transplant team was thrilled with my transformation. While HSCT helped with remission, but it’s essential to understand that simply lying in bed won’t build strength in the body and lungs. Yes, HSCT alone didn’t completely change my life. I started eating a healthy diet, practicing yoga, doing strengthening exercises, and I didn’t skip physiotherapy for a year. I even began playing badminton and dancing again. Initially, I would tire easily after just a minute of activity, but as time passed, I was able to keep up with healthy individuals. Practice truly makes perfect. I began offering free yoga classes to those who couldn’t afford to pay, to help to improve their lives and promote flexibility. When we let fear hold us back, it can feel impossible to move ahead. However, embracing courage helps us discover a way forward.

Thank you….