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Faces of hope

Amyn’s Story

The diagnosis was a bit of a challenge. I first started having issues with Raynaud’s in October 2019 and then lung issues which got progressively worse. Of course, Covid hit in early 2020 and so when I had issues with breathing and coughing, every doctor made me do a Covid test before they would even look at me. Getting an appointment with a respirologist was impossible. My family doctor finally got me in to see a Vascular Specialist in April 2021 who then passed me on to a Rheumatologist, who then got me to a Respirologist. Once they all realized this was serious, things moved much faster. I was diagnosed with Diffuse Systemic Sclerosis (Scleroderma) in June 2021. From first symptoms to an actual diagnosis, it took 20 months! They found I had skin thickening, Raynaud’s, GERD, and ILD (interstitial lung disease). My lungs were at about 50% capacity, I was losing weight and declining fast.

This was not a gut punch but rather a body blow. I had always been healthy; I don’t drink, I don’t smoke, I exercise regularly and eat well (ok, so I have a penchant for Coca Cola and Big Macs but I did this in moderation). The diagnosis was a true existential crisis for me. My kids were 15 and 13 at the time and I was terrified of what happens if I die. Yes, I tried to keep calm on the outside, but inside I was terrified. I have always been a planner and forward thinker and considered all the possibilities and in this case, a lot of the possibilities led to me dying. Not good. The demons in my head kept harping on about “what if I die?”

Like I said, I have always been a planner and forward thinker so upon diagnosis, I started researching and learning everything I could about Scleroderma. I realized it is a very challenging disease to deal with as it presents in so many different ways and affects so many parts of the body. Also, since the disease is rare, most rheumatologists have not seen very many cases (if any). As such, I hunted down one of the world’s top rheumatologists who specializes in Scleroderma (he edited a book used to teach other doctors about the disease so he must know a thing or two). I found out that Dr. Daniel Furst also takes patients and made my way to the US to consult with him. His first words to me were “Scleroderma Can Be Treated”. I liked him already. Working with my local doctors, Dr. Furst took a more aggressive treatment approach and while I still have Scleroderma, my lungs are now at about 60% and my mRSS is 0 (yes, zero according to Dr. Furst). I still have Raynaud’s, GERD, ILD, fatigue, and Peyronie’s (yes, the disease affects everything), but I am generally stable and feeling good.

Battling the demons in my head. When we talk about chronic disease, everyone tends to focus on the physical aspects of the disease. What they tend to forget about is the mental impact. I am a deeply religious person and generally very optimistic in my approach to life. However, the body blow of the Scleroderma diagnosis really hit me hard mentally. While I try to hide what I feel and be strong for those around me, I have days when I just feel like hiding away and crying. Prior to Scleroderma, I had confidence that things would work out well in life. Now I wonder about the plans for growing old with my wife. I often wonder if I will see my kids graduate from college or will I be around to play with my grandchildren. I don’t really mind dying, eventually all of us will, but there are just so many things I want to share and do with my family. Scleroderma introduced this great uncertainty – these demons in my head. Always wondering, always questioning, is everything ok? What if? Crazy thoughts. I just wish the demons would go away and life could go back to what it was before.

Many times, I have to remind myself that I am still alive, and I am doing everything possible to fight this terrible disease. I have to keep on living life to the fullest knowing that I have to constantly take all these crazy meds and keep taking tests to ensure all is well. Oh, well. Life happens. I will keep battling the demons in my head while I work to raise money to help find a cure.