Book Review: A Life with Uncertainty

A Life with Uncertainty is Claudia Sultan’s personal true story of living with a rare autoimmune disease Scleroderma.

Claudia is an Australian-born Lebanese woman. She is one of five children growing up with three brothers and one sister. Her parents are strong family-minded with Islamic faith and supported their children with their passions and interests. They had a large extended family where everyone knew everyone’s business but were always there to lend a hand if in need.

In the Winter of 2013 Claudia noticed changes in her fingers, they were changing colour and she felt numbness. After visiting a vascular specialist, she was diagnosed with Raynaud’s syndrome. As weeks passed her symptoms got worse, travelling to her wrists and ankles.

In November 2013 she was officially diagnosed with Systemic Scleroderma; a rare chronic autoimmune disease that involves the hardening and tightening of the skin and connective tissues. There are many different types of sclerodermas.

In some people, scleroderma affects only the skin but also harms structures beyond the skin, such as blood vessels, internal organs, and the digestive tract which Claudia soon found out. By 2014 her condition had worsened, her rheumatologist had her taking various medications that were not working.

Claudia was losing her faith and hated what was happening to her. When the pharmaceutical drugs were only temporarily helping, Claudia began to research other treatments.

She connected with Dr. Cristopher Browne a well know rheumatologist in Sydney. After discussing many treatments he encouraged her to participate in a stem cell transplant being run by St. Vincent’s Hospital under the care of Dr. John Moore and Dr. Helen Englert.

There were many stages and planning leading up to Claudia’s surgery, the treatment was to re-program her immune system, wiping out the abnormal cells and allowing the stem cells to rebuild a new, disease-free immune system. On the day she called her second birthday the surgery was a success and now it was time for recovery.

On the 15th of October 2015, Claudia was discharged from St. Vincent’s Hospital. She was full of hope and optimism until she had a relapse and was admitted back to the hospital. Mentally and physically, Claudia struggled but with the love of her family and a well-established medical team she responded well to treatment and was allowed home with follow-up outpatient appointments. Claudia let go of the woman she once was and evolved as a new one living. She accepted her illness, the complications, and the changes to her body and made plans for her future.

I really connected with Claudia’s story as I live with a lifelong chronic autoimmune disease that I do not get a break from, 24 hours day 7 days a week with constant monitoring hoping you will see another day. There are moments you feel like a burden to your family who in return are fearful of losing you.

The upsides of living with a chronic disease are the strength you get and your resilience. I really felt that with Claudia as she went through the stages of being first diagnosed to present.

Claudia’s story is filled with hope, courage and tight family bonds. Your life, today, and tomorrow are gifts. Everything that has happened happens for a reason, it gets you to where you are today, you need to enjoy your life and all it has to offer and most of al be grateful.

Trusting your faith and connecting with supportive people, finding the right doctors to help with your treatment. This is a truly inspiring story of perseverance, and the sheer will to never give up. I highly recommend it.

Thank you to Beauty and Lace and Shawline Publishing for the chance to read and review.

Leave a Reply

Your email address will not be published. Required fields are marked *