My story started in August 2018, although it wasn’t until the end of 2019 when I was diagnosed with Scleroderma Renal Crisis. I had been dealing for a year and a half with unnamed medical issues: multiple misdiagnoses, several allergic reactions to medications, and my body getting progressively weaker.

The cause? Scleroderma, a rare autoimmune disease that causes the skin to harden due to an excess of collagen in the body; this can lead to problems in numerous internal organs such as the lungs and kidneys. In my case, kidney damage sent me to a hospital ICU, where I remained for about a month, followed by 5 months of dialysis.

This was extremely hard for me to understand. My body was weak, and I had lost a lot of muscle mass, which impacted my mobility. My journey was long and hard, with challenges at every corner, from negative reactions to drugs, to my body adjusting not only to Scleroderma, but also dialysis. The latter required three sessions a week from 6am – 10:30am. My whole life was turned upside down, and my family had to drop everything to help me manage and cope.

This diagnosis was extremely challenging for me and my family. I put my faith in God, and summoned the will and stamina to get off dialysis. I knew I had to get my kidneys functioning, and with the help of my family and nephrologist, I diligently worked to understand my blood panel markers and urine so that I had the ability to track my own progress. I was now so anemic I needed weekly Retacrit shots. I had to learn to walk again and build muscle mass which involved weekly Physiotherapy sessions. I had to understand my diet and nutrition to ensure my kidneys were working to get stronger. After 5 months I did get off dialysis and adopted a strict regimen for diet, exercise, mindfulness, self care, and acceptance of the new norm.

Prior to my illness I was in high tech and had a career which I could no longer pursue due to my diagnosed illness. I had to accept The New Me, so I turned to therapy as my coping mechanism to help manage and understand my new emotions. You must be your own advocate, understand your condition, and partner with your medical and care team on this journey.

Since then, as a Scleroderma patient and advocate, I continue to live with many symptoms: skin thickening & inflammation throughout my body, joint pain, muscle weakness, acid reflux, high sensitivity to cold, and dry eyes. While focusing on my health, I am still living, healing, and working on getting stronger every day. My personal advice is to do what brings you joy; I joined a local choir and I like to travel. Every day is a new day and a new beginning.

As with every rare and chronic disease, when you take up permanent residence, as I have, in what author Susan Sontag called, “the kingdom of the sick”, no one patient looks the same or experiences the same symptoms, which makes diagnoses and treatments challenging. I spend my days now on self care and I am involved with different patient advocacy groups, talking to new patients and partnering with Scleroderma Foundations to help build awareness through education.

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