Nayanashree Sanikop
Karnataka (India)
NAYANASHREE SANIKOP
Scleroderma Stories Issue 5
Please introduce yourself
My full name is Nayanashree R. Sanikop, but my family and friends call me Naina. I live in Karnataka, which is in the south of India. I’m a 33-year-old software engineer working for an MNC as a test lead, and I’ve been fighting scleroderma for the past 16 years.
My journey has been pretty adventurous, and from the time of my diagnosis, I’ve always wanted to inspire people and help them lead a life with a positive attitude. I like to work on creating awareness about scleroderma, travel, and make friends. At the same time, I am career oriented.
What were your early symptoms, and when were you diagnosed?
I was diagnosed with scleroderma when I was approximately 17. The first time I noticed symptoms was in the 10th grade when I went to school early in the morning. The tip of my finger turned blue, which was very unusual because, in India, the weather isn’t cold enough that you start freezing. This continued until the 11th grade. My uncle and cousin are doctors, and they took a look and said that maybe it was because of stress about studies. I went ahead and ignored it for the time being, and I started wearing gloves and sweaters whenever it got really cold.
But I had to go to a lot of tuition classes, which began early in the morning at 5 a.m. That was when I started riding my two-wheeler. My fingers and entire palm started to turn blue and numb, and I couldn’t hold my pen. Two of my best friends used to sit on either side and rub my hands to get them warm. They’d do these “warm-up sessions” before the teacher would arrive, and only then was I able to even hold my pen. I hadn’t experienced any other symptoms yet, so we didn’t know which specialist to consult.
Finally, one of my cousins suggested that this was something else. We decided to get it checked out at a nearby medical college. (KLE’s Dr. Prabhakar Kore Hospital & Medical Research Centre). I was around 16 or 17 at the time. They ran a series of tests, the results of which took a couple of days to arrive. I had no clue what was going on. All I could tell was that some vitals/tests were marked positive, so I could figure that it was not normal and something was wrong. After reading the reports, my uncle said I had to see a rheumatologist. I didn’t know what rheumatology or immunology was at the time.
The rheumatologist told me that it was a skin issue where scarring was happening from within, that I had to take a couple of medicines, and that my illness would be cured over a period of three to four years. She put me on steroids and a few medicines like methotrexate and the vasodilator Nifedipine. It took a lot of time for my body to adapt to medicine and my pattern of studies. I was given IV injections and saline right before my 12th board exams. These medicines caused severe acidity, and I was nauseous just a few hours before my exam, but I didn’t let it hold me back because I really wanted to be an engineer. So I kept going. Even now, I keep going; I don’t stop. Work is worship, which helps me overcome my pain.
After one year, during my first year of studying engineering, I was diagnosed with tuberculosis, for which I was given steroids. It was so painful for me to undergo HRCT (high-resolution computed tomography). I literally felt like dying when they put contrast in me. It was running through my veins, and it was like giving me an electric shock – so I was crying at the top of my voice. My uncle ran into the radiation room, where nobody is allowed. He made sure that I was fine, at least until we did the scan. We had to pause my scleroderma treatment till I finished my tuberculosis course of treatment. It was really tough, but I made sure to give my 1st and 2nd-semester exams and score well.
As a high school student, how well did you understand what scleroderma was?
I didn’t think much of it because the doctor told me it was a skin-related issue. We assumed that it was pigmentation that would be cured over time. I had no clue that this was a progressive disease that would start affecting my other organs as well, and that it doesn’t have a cure.
We hardly had access to the internet back then. I didn’t bother looking up what scleroderma is because I thought my uncle and cousin already knew about my condition, and if it was anything serious, they would’ve told me. I focused on my career because I wanted to get into an engineering college. I didn’t want to settle in India either; I wanted to do my masters in the U.S. at one of the good universities there.
The first time I started to understand what scleroderma was in my 2nd year of engineering. I was 18 or 19 at the time. I started getting really painful digital ulcers, and I had to get my friend’s help to take notes and do lab assignments.
One of my uncles knew a rheumatologist in Bangalore, who I’m currently seeing. He explained what scleroderma was and that there might be a chance that I have diffuse systemic sclerosis. It was a bit hard to believe because I had not experienced any other symptoms yet. His name is Dr. Ramesh Jois, and he is one of the best doctors I have ever met. He’s so positive and encouraging. He’s always pushing me to keep going and remain active.
When did you try to learn more about scleroderma?
It was at the time when I returned from Bangalore after my consultation that I started searching more about scleroderma. The first time the doctor saw me, he compared how my nose looked to previous pictures and showed me how it had changed. My lips had also become like a fish’s mouth. He also pointed out the pigmentation and skin hardening that was already happening on my body but that I wasn’t entirely aware of.
I wanted to understand more. I read that it was going to change my face and overall appearance, and it was going to affect my internal organs. I also read that scleroderma can impact pregnancy in the future after reading many patient stories. Realizing all of this broke me. I had tears rolling down my cheeks, but I didn’t want to stop or look away. I wanted to be prepared without panicking or feeling sorry for myself.
My friends would ask me, out of concern, about what the doctor said and how my appointments went. It was very difficult to explain it to everyone around me. My parents understood it very well.
This was the time when I was studying in my engineering 3rd year; I started reading more about scleroderma, and I clearly understood how complicated scleroderma is and that my life would not be the same as others’. I knew the complications could turn up at any time, but I didn’t see them coming so soon.
How have your symptoms progressed since then?
In 2013, I underwent an HRCT scan of my lungs, where we saw a honeycomb pattern in my lungs. When we first saw the lung changes, they didn’t make any major modifications to my treatment. In 2015, I started coughing, so I underwent another scan.
I still remember the exact date when we saw aggressive progression in my lung – November 29th – because it was my birthday when we got the report. I visited the doctor that evening, and he informed me that my lung showed an aggressive progression of fibrosis because of which he had to start immunosuppressants. They added additional vasodilators, along with antacids, to my treatment regimen. When I returned home, My cousins and my aunt were waiting with a cake for my birthday celebration. They knew the reports, and they wanted to take my mind off of those thoughts.
Back then in 2015, when there was significant progression in my ILD, I was able to do routine activities and even work in the office, but sitting in a room with air conditioning was a bit difficult. But in 2019, again, I started having a continuous cough, and it was very severe. I couldn’t walk 10 steps, and it was very difficult even to carry my laptop bag. So, again, I underwent HRCT, which showed a major progression in lung fibrosis, so they increased the dosage of the immunosuppressants along with steroids. That was when I started to work from home in February 2020. I moved back to my hometown just before COVID started.
I had a small ulcer on the second toe of my right leg, which wasn’t too bad. But I started noticing color changes in June 2020, and it started to get painful. It was so severe that I couldn’t sleep. My right limb was swollen, and I had constant throbbing pain. We got a Doppler ultrasound done, which showed low velocity in blood circulation. Then, we did an angiogram and learned that there was a block. My toe had turned gangrenous by then.
I had to undergo angioplasty and aspiration for the blood clot. Thankfully, after the surgery, they managed to save the rest of my foot. My lungs were also starting to stabilize slowly, so the steroids were tapered down and stopped.
Then, in 2021, I was infected with COVID. That is when the second toe of my left leg suddenly started hurting and turning blue overnight. I was prescribed a blood thinner, which I then took for 10 days. In June 2021, the same throbbing and ischemic pain started, but on my left leg this time, so I underwent an angioplasty again. After that, my right limb great toe developed an ulcer that didn’t get better even after repeated debridement. The doctors prescribed me antibiotics and painkillers.
I managed to take a trip to Rajasthan, but by the time I came back, my limbs started swelling because there was no blood supply again. After frequent IV antibiotics, it didn’t recover. We tried a second angioplasty, but it failed. We even tried electric stimulation therapy to reduce the pain, but that helped me for only three days. I was on lots of antibiotics, a lot of painkillers, and a lot of injections to help reduce the pain.
That was the first time I stopped working for an entire month, and I felt very guilty about that and how everybody else was taking care of me. My mom was not that well either, as she was battling cancer from the past 10 years. However, she was great support and took care of me even when she was in pain.
Could you please tell us about your stem cell treatment?
The second angioplasty on the right limb didn’t open the blocks, and a doctor from Belgaum Kle suggested that I visit Dr. Vimal Someshwar for next steps. Without wasting any time, we visited Kokilaben Dhirubhai Ambani Hospital in Mumbai and consulted Dr. Vimal Someshwar (an interventional radiologist). He quickly took a look at my previous angioplasty and angiogram reports and told me that my doctors from Belgaum did everything they could, and that the next step for us was to try Mesenchymal Stem Cells to improve vascularity.
The doctor had performed the stem cell transplant on a diabetic patient, but for scleroderma with a peripheral disease, I was the first case and it would be a new trial. I agreed, as I was in a do-or-die situation, and I always wanted to be part of such trials which can help others living with similar conditions and work for a better cause. The doctor explained the procedure and next steps to me. So, I underwent Mesenchymal Stem Cells therapy to help improve vascularity of my right limb, which would help avoid amputation and get rid of pain. The doctor guided me with post-procedure care and told me that it would take four to six weeks for results to show. After six to seven weeks, I saw a noticeable relief. I could walk easily within my home, at least. The treatment worked wonders. Now, I don’t feel any pain, and I can go out with some assistance from my friends. I ended up losing both my second toes, but I’m a lot better now. Recently, I’ve felt a little breathless, and I’ve been diagnosed with mild PAH; however, no change in my medication is required as of now.
What has been your most challenging symptom?
Over the past three years, I have had severe pain, which has greatly impacted my sleep. It has forced me to sleep in a sitting position and keep my limbs away from the bed to ensure proper blood supply and alleviate the pain. Despite this, I consider myself fortunate that I am still able to walk, as many activities have become increasingly challenging. Dancing, in particular, has been significantly affected, and I now rely on assistance from family members and friends for small tasks. It has been a source of guilt for me not being able to do things independently.
Also, there is always the fear of losing a job. With this condition, I can’t visit the office physically, but I can still work from home – but I still end up worrying that HR might not understand my case for work-from-home approval. I’m getting good support from the Manager, but I still end up worrying about losing my job.
Where do you find support?
I’m incredibly fortunate to have the unwavering support and understanding of my family members. They have provided me with all the necessary accommodations since day one, whether it’s providing hand gloves, heaters in the room, or arranging transportation for me when I go out.
My mother, in particular, has been my constant companion throughout this journey, understanding every detail of what I have been going through. My mother was my biggest support. But I lost my mother last year in July 2022 as she was suffering from cancer. This incident has caused the biggest void in my life, but I keep giving and achieving things I promised to my mother.
While I didn’t share all the specifics with my father due to his history of anxiety, he has always been by my side whenever we had to rush to the hospital. My sisters have been equally supportive, with one taking care of household matters while the others accompany me during hospital admissions. Extended family, including sisters-in-law, have also been aware of my condition and offer assistance whenever needed, whether it’s adjusting the environment for my comfort or preparing warm beverages. Organizing my wardrobe and room is taken care of by my sister with the help of others.
My father continues to educate and support me, despite his current struggles with anxiety. We make efforts to keep a positive atmosphere by taking walks, watching movies, and discussing my work and progress. The importance of staying positive and connected with friends and family is something I have learned from my mother.
While there were a few individuals who initially didn’t understand my condition, I made sure to explain it until they did. If someone chose not to understand, I stopped discussing it with them. Fortunately, my friends, including those from school, former colleagues, and flatmates, have been incredibly helpful and supportive. They have been understanding of my limitations and have gone the extra mile, cooking for me when I felt tired.
I consider myself very fortunate. However, there were a few colleagues when I initially started my career who didn’t grasp the situation, placed undue emphasis on marriage, or questioned my plans for the future. But in my present workplace, I get great support from my managers who listen to me and show interest in understanding my condition. Despite my desire to go abroad, my health restrictions posed limitations in that regard.
What helps you navigate through difficult times?
Whenever I feel low, I usually try to practice some light dance moves (though I can’t stand or jump around), talk to my sisters, and reach out to my friends and meet up for a coffee or enjoy a good meal together. Traveling and taking a break also helps me rejuvenate. Meeting my cousins is another source of comfort and support. Music plays a significant role in lifting my spirits.
Sometimes, I watch random Bollywood movies or indulge in watching my favorite actor’s films repeatedly. At times, I also enjoy watching mythological TV series and not to forget the Friends series. I also spend time watching travel blogs and spend my weekends mainly on creating content for scleroderma awareness.
How have you adapted to pursue your education and work goals?
Initially, finding employment was challenging due to the rigorous selection processes and specific skill requirements that didn’t consider the impact of scleroderma. I didn’t want to commit to something that would put excessive pressure on me and worsen my well-being. Consequently, I chose to pursue opportunities within my existing skill set. However, seeing my peers progress in their careers while I fell behind was disappointing.
Moreover, during this time, my mother was undergoing chemotherapy, which required me to travel and further affected my well-being. After working for two and a half years after my engineering degree, I enrolled in a master’s program. However, I dropped out as my heart wasn’t truly in it.
During that time, an opportunity arose at my friend’s startup, and I joined the company. From there, I transitioned to different companies, actively searching for environments that could accommodate my specific needs related to scleroderma. Temperature and airflow were crucial factors, as excessive fans or air conditioning could worsen my symptoms. I ensured I had my own room and arranged for a caregiver to help with timely meals. Hygiene was also essential when selecting a place to stay or work.
This gradual adjustment process allowed me to make progress in my career. Fortunately, I’ve reached a point where I approach symptoms or changes with a mindset of finding alternative solutions rather than becoming discouraged.
Have you communicated with coworkers about scleroderma?
Initially, it was challenging to explain my limitations as a fresher, as there is an expectation for freshers to complete assigned tasks. Some bosses didn’t comprehend my situation. However, when there was a change in the project assessment at work, I encountered understanding individuals who recognized I had some health issues and needed additional time.
Nonetheless, I always ensured that I completed my work on time and that my health didn’t affect it. If I noticed any changes in my symptoms, I promptly informed my manager and teammates, maintaining transparency. I believe in being honest about my work, so even now, whenever something arises, I immediately communicate with my manager, informing them if I need to rush to the hospital. In such cases, I delegate tasks to my team members.
I have learned and try my best to keep my medical condition separate from my profession, but I am fortunate to have colleagues who are not only understanding but also take the initiative to learn about scleroderma. They consistently motivate me, acknowledge my progress, and provide support during challenging times, such as the loss of my mother or when I underwent surgery.
How has scleroderma affected your relationships?
Scleroderma has significantly impacted my approach to relationships. At the age of 19, I became aware of the complex challenges that lie ahead. Society often labels women as “good” only if they are happily married or have children. I didn’t want to be the subject of emotion to anyone and a phase of a relationship would come with expectations that I cannot fulfill. I am not someone who would keep convincing others or explaining and take blames for my health condition. Moreover, I didn’t want to be emotionally dependent on a partner who could potentially weaken me during crucial decision-making moments.
There were individuals who expressed interest in a relationship, and as a human being, I experienced moments of attraction as well. However, I never envisioned myself being in a relationship, getting married, or having children.
I didn’t want a third person to either strengthen or weaken me, so I avoided getting into any relationships that could potentially lead to negative outcomes. Looking back now, I realize that this was the best decision I made. I didn’t want someone to blame me or perceive my health condition as their burden. I didn’t want my inability to meet certain expectations, which often accompany marriage, to cause sadness or any other negative consequences.
What’s most challenging about living with scleroderma?
The most difficult part of living with scleroderma is the desire to maintain independence and accomplish various tasks. Whether it’s completing my bucket list of activities, handling household chores, or engaging in travel and socializing, not being able to do everything myself brings about feelings of guilt.
During the rainy season or winter, I often find myself confined to my home, which is disheartening. Additionally, while many people have returned to the office, I can no longer participate in physical routines or work in crowded environments like before, which is another source of sadness. It’s ironic that when I crave something, I don’t have the flexibility, but when others have it, they desire something else.
What lifestyle changes have you made?
One notable change revolves around dressing. During cold weather or winter, I must layer up with jackets and gloves, deviating from my previous preference for trendy and short-sleeved clothing. Also, I’ve completely eliminated ice cream and cold drinks from my diet for the past 14 years. While I may buy ice cream for my cousins, nephews, and nieces, I personally refrain from consuming it due to its potential negative impact on my health.
Furthermore, my mobility is limited. I no longer ride a two-wheeler, acknowledging my own limitations. I’ve had to adjust and prepare for a different life compared to what I envisioned ten or even five years ago. Though I understand that comparing myself to others is separate, there were moments when I contemplated pursuing my master’s degree abroad. However, considering the demanding routines and responsibilities associated with academic courses, as well as managing household tasks on my own, I realized I am not equipped to handle such challenges. Factors like weather conditions, daily chores, assignments, and cleaning further reinforced my decision not to pursue studies abroad. Although it was initially a concern, I have now come to accept it and find contentment in pursuing my academic and personal interests within my current environment.
There have been instances where I had to miss out on certain events or activities due to my scleroderma. One memorable moment I wanted to experience was scuba diving, which was on my bucket list. I also have fond memories of performing dance with my cousins, with two of them standing behind me while I performed.
Unfortunately, there were occasions when I had to miss out on traveling to a few places with my friends because of my health condition. There were times when I wasn’t feeling well or in good health, so I had to refrain from attending important events like my favorite cousin’s wedding, which happened to fall on the same day as my first surgery. Additionally, my planned trip to the US has been postponed multiple times due to my health condition. These are a few things that I have missed out on or had to postpone due to my health.
Has scleroderma changed your approach to life or new things?
Yes, having scleroderma has indeed influenced the way I approach life and new experiences. Although I was quite young when I was diagnosed, I gradually understood the challenges that come with this rare condition. This realization has made me view my own situation from a positive perspective. I focus on what I have and how far I have come.
I remember a moment when I visited a doctor with my mother for her consultation, and I saw a pediatric doctor treating a child undergoing chemotherapy for a type of cancer. Comparing my condition to his, I realized that I am in a better place.
I have no complaints about having scleroderma. It has transformed me into a better person. I have made decisions to prioritize my health, career, family, and friends. When relatives or friends inquire about marriage, I am well aware of how to respond. I have explicitly expressed to my parents that I do not wish to get married. It was challenging for my mother to come to terms with this decision. It was difficult for my cousins to accept that I am dealing with a lifelong battle and that my life may not be conventional. However, with time, they all came to support my decision.
Has scleroderma’s effects on your physical appearance influenced your confidence?
Yes, there was a time when I lacked confidence, especially when my career was not progressing as I had hoped. I believed that my physical appearance, particularly my facial appearance, was not impressive enough, which affected my confidence in speaking or being selected for opportunities. There were moments when I attributed my health condition to my setbacks.
However, I gradually realized that it was not the primary factor. It was during this time that I received support from people who recognized my capabilities beyond my appearance. My friends, cousins, and even my uncle and aunt supported my decision that I want to embrace myself as I am and not feel the need to change.
I believe that everyone goes through phases in life where they question themselves and their worth. There are times when, no matter how strong you are, people compare you or ask intrusive questions. When you are alone at home, sitting on a couch, those questions naturally come to mind. The best approach is to deal with them, find solutions, and affirm that you are capable and have achieved great things.
Could you please describe your scleroderma-related medical expenses?
The cost of the basic medications for my scleroderma has increased exponentially since my diagnosis. Other medical expenses include the need for warm clothes, heaters (I look for the best quality, and my friend sends me some from the US), heat patches, heated hand gloves, and foot warmers. Along with medical expenses, other necessities such as moisturizers, shower gels, and specialized diets are also costly.
Routine blood tests, Doppler ultrasounds, echocardiograms, pulmonary tests, and other necessary tests are all expensive but essential for monitoring my condition. Any small change in these tests might indicate the need for further medical attention, and not all patients have the same symptoms. Antibiotics, even for minor issues like fever, come in high dosages and are costly. Hospitalization is also a significant expense.
On the first day I receive my salary, I have to calculate the amount I need for my medical expenses for the month and save some money for the future. I know that someday I might become disabled and require oxygen, so I need to save for a portable oxygen machine.
Fortunately, the insurance provided by my company covers surgical expenses and hospitalization. However, in India, there is no insurance that covers scleroderma or any condition triggered by scleroderma.
What are your hobbies?
I have enjoyed dancing since my childhood. I have performed at numerous family gatherings, weddings, and even my brother’s college event. In school, I danced with a group of friends, and in college, we had a common group of friends with whom we gathered for weddings.
Due to recent surgeries, I am currently unable to stand and dance, so I adapt by sitting on a chair and dancing with my friends. Unfortunately, I had to stop dancing for the past three years. My last performance was captured in a video during COVID. However, as my mobility declined, I could only perform for shorter durations. Dancing also serves as a means for my doctors to assess my lung capacity and function, given the involvement of my lungs.
Are you a member of any scleroderma communities?
I have recently joined several NGOs, and I have been a member of Scleroderma India for a long time. It was started by a patient from New Delhi, whom we sadly lost last year. She conducted many mini-sessions in the group.
However, there was a negative impact on me when they created a WhatsApp group where people started calling me and spreading negativity. At that time, I wasn’t ready to talk about it, and it drained my energy. Nevertheless, I am still in contact with a few people whom I enjoyed talking to.
Being part of these communities has helped me connect with people who are going through similar challenges. We interact and share information about doctors, hospitals, and better places where people are more understanding of scleroderma and the necessary lifestyle adjustments.
What advice do you have for people with scleroderma or other chronic illnesses?
It is easier said than done, but try to live positively. Take medication on time, eat good food, surround yourself with a positive and supportive circle. Spread happiness wherever you go, even though you may be in pain.
While we can hope for a treatment, accepting the condition is the biggest challenge. When we accept it, we overcome our limitations.
Not everyone can work, but find something that makes you happy and keeps you engaged. I’m positive and happy, even though I sometimes get traumatized by new symptoms. I have my friends, colleagues, and family who are always by my side in every decision.
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