God, Hidradenitis Suppurativa, and Me

Born to secular and rational parents, I was not brought up as a religious person. Though I never negated God in my life, I had not been formally introduced to any prescribed mode of worship. My parents had given me the freedom to discover my "maker" in my own way.

Darkest phase of life

I was going through the darkest phase of my life after my daughter was diagnosed with hidradenitis suppurativa. With no clear understanding of this ailment, we were hopping from one doctor to another in search of a remedy that could mollify the marble-sized lumps that had blemished her skin. It seemed like walking in and out of medical laboratories that experimented with new techniques on vulnerable living beings. Every medical practitioner had a different diagnosis and a new treatment plan that promised remission.

After my daughter underwent a rather painful autopsy to eliminate cancer, a well-known dermatologist in our city suggested we begin with steroids. He was certain that the medication would not only help manage the condition but also assured us that HS would eventually disappear. With every passing month, a series of injections were given in her armpits. My daughter would wail in pain and clutch my hand in anguish while the doctor administered several pricks on the tender puss filled lesions.

Unfortunately, the leaky bumps never subsided. Despite eating healthy and exercising regularly, I noticed that she had gained a lot of weight. Much to our surprise, the doctor refused to acknowledge that she had become obese due to steroids. After 9 long months of agonizing torture that her body underwent, we decided to consult another dermatologist.

Never doubt the power of prayer

Dealing with the complexities of an over-active immune system is not new to me. I have lived with diabetes and vitiligo for nearly 32 years. Managing blood sugar levels and dealing with the stigma of looking different from my fellow beings affected the overall quality of my life. Thankfully, doctors could guide me on the possible forms of treatment as these conditions weren’t uncommon.

But when HS surfaced, I was left to wonder what the future would look like for my daughter. A state of helplessness lingered in me for a long time. But I didn’t let this feeling of inadequacy affect my mental well-being. Instead, I drew my attention inwards as a way of knowing and possibly connecting to a vague understanding I had about God. As if in response to a prayer, help arrived in more ways than one.

We were introduced to Dr.Illtefat Hamzavi, senior dermatologist at Henry Ford Hospital, Detroit, Michigan. He had come to India to deliver a lecture at a College in Mumbai. He explained to us at length about sinus tracts and its possible progress into the fascia and muscle. If left untreated, the draining sinuses might persist for years that would make it hard to lead a pain-free life. Even though there wasn’t any definitive treatment for this condition, the ongoing clinical trials and research studies in the US was convincing enough for me to take the decision of sending her abroad for her first surgery. My cousin living in the US had generously agreed to house my daughter and care for her while she would undergo treatment.

Faith over fear

After 5 months of her stay in the US, I was happy to see her home. I noticed a distinct change in her attitude. She had, to a great degree, regained her enthusiasm and optimism for life. As for me, my belief in the existence of an eternal supreme being had been firmly established. I had realized that the more I surrendered to my maker, the more help I would receive. I had, by then, devised my own techniques of reaching out to Him.

Practicing meditation on a regular basis motivated me to walk the path of courage instead of self-doubt. I might continue to stumble upon many pitfalls in this arduous journey, but I realized that by holding on to faith in the divine has been and will always be truly rewarding.