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Tej's Story

We first met Tej Anand and his wife at the Lung Fibrosis Symposium at Yale in 2012. Since scleroderma is so rare and even more so in men, meeting Tej peaked our interest in how a man manages life with scleroderma. This is his story.

Tell me about your journey with scleroderma?

I was diagnosed with Interstitial Lung Disease (ILD) caused by scleroderma at the end of October in 2012. My symptoms were heavy labored breathing when I did normal tasks such as climbing a flight of stairs and numbness and discoloration in my toes and fingers or Raynaud’s syndrome.  

My first reaction was disbelief especially when I was told that one of the “treatments” would be chemotherapy.  I am a Sikh with unshorn hair and beard and the thought of losing my hair drove me to despair.  I also couldn’t believe that nobody could tell me what had caused my scleroderma.  I am still searching for that answer.  

It is extremely unsettling to have a disease that people say is rare and incurable.  The research that I did on ILD was also hopeless pointing to low 5 and 10 year survival rates. So here I was, 48 years old, with two young teenage children looking at a bleak future. It seemed to me that I had run out of God’s blessings that so far had powered me on this earth.

 

Outwardly I kept a positive outlook. I joked about having a rare disease – my former colleagues used to tell me how unique I was, sometimes referring to me as 1 in a million and now I felt this moniker had been confirmed to some extent.

Inwardly, I was scared. I had a lot of unanswered questions: How would my appearance change? Would I suffer? What other organs would be impacted after my lungs? What did I need to do to ensure the financial stability of my family? What did I need to do so that my family did not need me anymore?

After seeking a second and a third opinion and numerous blood and pulmonary function tests, I finally came to accept my diagnosis of systemic sclerosis sine scleroderma.

In December just before Christmas I started chemotherapy for six months.  My family, my friends, my colleagues, and my community prayed for me.  This is what I believed gave me strength and allowed me to joke with the nurses at the infusion center.  My colleagues at work were very understanding.  I took time off from work and worked from home on many occasions.  My hair and beard thinned and I lost about 30 pounds but my appearance did not change noticeably. I was fatigued, could not eat, felt dizzy and disoriented, my voice became softer and I could not concentrate but soon I learnt the chemotherapy cycle and adjusted to it.

In May I had my last chemotherapy treatment and by the middle of June the effects of that treatment wore off.   During these six months I used to joke that my arm resembled that of a drug addict with all the punctures for the IV, the blood tests and the blood draws for research purposes.

I am now on medication that suppresses my immune system. I have a blood test every month and a pulmonary function test every quarter.  All indications are that my ILD is stable and has not worsened.  My doctors tell me that I have reacted extremely well to the chemotherapy.  All the tests have also show that none of my other organs are impacted.

I was wrong to think that I had run out of God’s blessings. I feel supremely blessed. I don’t take any day, any relationship, and any interaction for granted. Each day is special. Every person in my life is a gift.  People tell me I have changed. I appear to be more anxious and that I am not as carefree as I used to be.  I think to myself that this change is probably a good thing.

What is the most difficult part of living with scleroderma for you and your family?

I asked one of my daughters what was the most difficult part of me having scleroderma and her answer was “realizing that my daddy is not invincible.” 

For me and my wife the two most difficult parts of living with scleroderma are 1) the sense of uncertainty and 2) the coordination of care among the many doctors and facilities involved.  The sense of uncertainty makes us fearful of the real and imaginary symptoms that we see in me.

How does scleroderma affect your day to day life?

I limit my physical activities, take measures to keep my hands and feet warm at all times, avoid unnecessary physical contact with people, and avoid eating out. I also try to limit my travel.

My biggest adjustment has been pacing myself during the day and watching the number of hours I spend in intense work.  This is the most important measure to manage my fatigue. Occasionally, I feel despondent and anxious but I am usually able to bounce back. When people ask me how I am doing, I have a radiant smile and I tell them, “I am wonderful and doing amazingly well!”

What do you wish more people knew about scleroderma?

I wish people knew how little is known about scleroderma and how debilitating this disease can be for someone suffering from it.  In general I wish more research could be directed at rare diseases such as scleroderma.

What do you do for fun? Any hobbies you enjoy?

I like to spend the time I am not working doing the following things: 1) spending time with my family doing anything and everything that they want to do, 2) praying and reflecting on the glorious wonders of the Lord, 3) reading, 4) watching Punjabi language movies (Punjabi is my mother tongue and hearing it spoken is soothing and comforting)  and 5) mentoring young people as they navigate their career aspirations.

What do you find your biggest recourse to cope with scleroderma?

My biggest recourse to cope with my disease is my journal. I confide my fears and my anxieties to my journal. In my journal I try to make sense of specific emotions and try to sort through coping mechanisms.

 

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