After struggling for 7 years with various vague ailments, Nilesh, 32 from Degloor, Maharashtra was relieved when the diagnosis of Scleroderma came through. Through the ups and downs of this condition, he tries to navigates both personal and work life with a positive outlook. He lives by the words: "Death is an End, whereas Life is full of Possibilities.”
Please tell us a bit about your condition. Can you describe it?
I am suffering from Scleroderma, an autoimmune condition which majorly affects and hardens your skin and internal organ tissues. Apart from these there are a lot of issues such as Raynaud’s, joint pain and stiffness, fingertip ulcers, tightening of skin on hands and face, acid reflux, mild consistent fever, difficulty in swallowing, difficulty in breathing, weakness, weight loss, headache, dry mouth etc.
When were you diagnosed?
I was diagnosed in 2017. I had been facing symptoms since 2010. The nature of the condition makes it difficult to diagnose.
What were the early symptoms? What made you go to a doctor?
I had fever (on and off), joint pain and major swelling of wrist and fingers, fatigue, fingers turning blue when exposed to cold, and ulcers. In 2015, I was in Pune when I started facing problem of Henoch-Schonlein purpura, which is a skin disease. At that time after hearing my different health problems my skin specialist suggested I get a ANA (antinuclear antibody) test done to detect certain autoimmune conditions. I did the test and after some time and it came positive.
After the ANA test result, I was suggested to meet a Rheumatologist, who then made the diagnosis.
What was your reaction to the diagnosis? How and when did you break it to your family?
Honestly, I was a bit relieved as something had been diagnosed after years of pain and suffering and uncertainty. I was quite optimistic at the beginning but at the same time I was bit worried about the future.
I immediately informed the same to few members of the family. They were supportive but couldn’t really understand the severity of the disease due to its complex nature.
What happened next?
Initial course of treatment was immunosuppressant and mild steroids. Later on, steroids were stopped.
Were there any complications from the primary condition?
There were no complications in the initial phase but as the disease progressed it started affecting my lungs. I developed Interstitial Lung Disease (ILD) which led to a spontaneous pneumothorax in 2022. It was life threatening experience.
Have you tried complementary medicine or therapies, like homeopathy or ayurveda? If yes, did it help?
No, I have not tried these
What medications are currently on?
I’m currently on below medicines:
Mycophenolic acid which is an immunosuppressant
Sildenafil to regulate blood flow and pressure
Aspirin daily
Tramadol for pain relief when needed
Esomeprazole for acid reflux (SOS for acidity)
Cholecaliferol for bone and teeth health once in 2 months
Were there any side-effects of the medicines? If yes, how do you manage them?
Tadalafil tablet caused a severe unbearable muscle pain so had to shift to sildenafil tablets from this month. No other side effects till now.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
Till now I have only consulted Rheumatologist and Pulmonologist. No other specialist required.
Did you have to travel outside your city for medical treatment or consult?
Yes. Currently I'm at my hometown (Degloor) and my doctor is from Hyderabad. He visits once a month to a nearby city (Nanded) so I travel there for his consult follow up every three months.
What changes have you made to your lifestyles because of this condition?
Lifestyle plays a vital role in management of Scleroderma.
I have worked really hard on lifestyle by maintaining healthy diet and regular exercise. I have almost stopped spicy and oily food, junk food, food which can cause acid reflux, etc. I strictly follow regular timings for eating and sleeping as well.
An hour of regular yoga in the morning has helped a lot to overcome muscle weakness and improve joint mobility. In the evening I train with weights for muscle strength and weight gain.
Apart from these I take proper rest and try to avoid unnecessary activities. I participate only in things which I am capable enough to do, basically I have learned to say “No” to people and a few things.
How did you mentally/emotionally cope with it all? Pls mention any specific times and issues that were difficult.
In general, I have quite a positive perspective towards life, so when I was diagnosed with scleroderma in the early stages of the disease, I was confident that I could overcome and beat this disease despite knowing the fact that it is not curable. But later on, I realized that I’m fighting a battle which I might not win. So, I decided to accept the truth and live as best a life as I possibly can by doing whatever I love.
When things get difficult, I prefer to talk to my family members and friends but at the end I realized that all they can do is sympathize but not empathize with what I actually feel or am going through.
It was a very difficult time for me when I had to compromise my career and stop chasing my dreams due to my condition. Until then, I couldn’t really explain the feeling of forgetting my dreams. Somehow, I preferred to accept the truth and learned the “art of letting go”.
I contacted the Scleroderma India Foundation, a patient support group, a year ago. Being connected to people like me gave me relief and a sense of belonging - at least a few people can actually understand my situation, and I can also help someone by sharing my experience with them. People at the Scleroderma India Foundation are always there to help, and I'm thankful to have them by my side.
How has your family supported you? Who has been your biggest support/companion through it all?
Earlier my family had no idea about the severity of the disease until the pneumothorax incident happened in 2022. Since then, they have supported whatever decision I take and are always there to take care of me.
When did you break the news to your friends and distant relatives? How did they take it?
In 2022, I was hospitalized due to spontaneous pneumothorax; the situation was quite critical. That time everyone around me got to know about my condition, most of them were shocked. Nobody really understands the complexity of the disease and how it had affected me. It is a kind of mystery to them so they put up their random guesses and opinions based on their limited awareness which is quite normal in India.
Sometimes I feel if it had been a cancer then it would have been easier for me to explain and easier for people to understand. Maybe, there wouldn’t have been any confusion about my health.
Did you inform your workplace? If yes, how did they handle it?
Currently I have taken a break from my career. Initially when I was working post diagnosis, I used to get ill frequently and co-workers wouldn’t understand my situation as I looked fit and fine. Some used to think that I was just giving excuses to avoid my job responsibilities but later when I informed my seniors about my health condition, they were worried and at the same time everyone was very helpful and have taken care of me whenever needed.
I felt that it was not appropriate to continue since I was not able to deliver properly at work. So, when I decided to resign, my seniors gave me all possible options to retain my role but I was not comfortable so finally decided to resign. My seniors told me that I’ll be always welcomed if in future I think of rejoining the organization.
What were some of the challenges you faced?
As a scleroderma patient every day is a challenge for you. This disease doesn’t really let you live your life to the fullest. Daily activities such as taking a bath is sometimes a challenge for us. I used to be quite healthy and used to play a lot of sports while growing up but I was unable to even open a simple bottle cap in the initial phase of the disease.
Scleroderma doesn’t allow you to be consistent at anything. It affects each and every part of your life be it your studies, job, any physical activities, social life, professional life, personal life and even your relationships. Many times, it has drained me mentally and emotionally as well.
Imagine being sick every other day. It kills you inside out. Since childhood I have been a great enthusiast but Scleroderma changed me a lot. There was a time when I was very weak and sick all the time. I was very low emotionally and underconfident in every aspect of my life. And the worst part was I couldn’t really share this with anyone as nobody would understand.
Sometimes I feel that having a caring and understanding partner would make my journey little bit easier but with this health condition it feels impossible to find one. Rather I myself believe that it would not be a good decision to bring in someone in my life and let that person suffer the same as me. They say marriage is greatest gamble of life - if you get right partner you'll sail through any storm but if you don't get one you'll definitely sink. The right one will make my life easy but the wrong one will be add on to the stress which may be harmful. So I preferred to stay single as of now.. you never know what is about to come your way.
What is your present condition?
Currently I’m doing well. I have managed to gather up all the courage and stand up again. With the help of a healthy lifestyle with good diet, exercise, medication and most importantly, a positive mindset, I have successfully controlled many of the symptoms.
What are you worried about for the future?
Not really about the future but being dependent on family sometimes makes me feel worried. And of course, I’m bit worried about my financial condition if any big health crisis occurs in future.
What is your learnings that you would like to share with patients who face similar challenges?
Don’t lose hope and don’t give up on life. Although this disease is not curable as of now, it can be managed very well to some extent with a healthy lifestyle and proper medication. Be grateful towards life. Learn the “art of letting go”.
When days are good live the moment and when days are bad take complete rest.
Now I live by these words: "Death is an End, whereas Life is full of Possibilities.”
