Girl With Several Rare Diagnoses Releases Book About Her Life

According to a story from The Straits Times, Nicole Lim, who recently turned eighteen, learned that she had three different rare diseases when she was just thirteen years old. Getting diagnosed with just a single rare disease is pretty scary already, but it is hard to imagine being told that you had multiple diseases. With support from the Singapore affiliate of the Make-a-Wish Foundation, she recently finished writing a book that chronicles her experiences.

One Patient, Multiple Diseases

Nicole’s book is called How To Be a Good Patient. Under the pen name Y. K. Riley, Nicole describes how, in her early childhood, she lived an active lifestyle similar to most other kids. However, everything changed in 2013. After experiencing bloody stool, stomach pain, and jaundice, doctors diagnosed her with autoimmune hepatitis. This is a rare disorder which causes the body’s own immune system to attack the liver. This was big news already, but not long after, Nicole was hit with even more diagnoses: primary sclerosing cholangitis, a disease which damages the bile ducts found in the liver, and ulcerative colitis. After these bombshells, playing outside was no longer an option because of her susceptibility to bruising and infections.

None of these diseases are curable, so Nicole has been forced to live with all of their symptoms and complications as well as endure the cocktail of treatments and medications necessary to manage them all. More recently, Nicole underwent a liver transplant. The operation occurred this past August. Nicole describes the procedure as a “second chance,” as it is likely that her old liver would have eventually failed entirely. 

Remarkably, the list of diagnoses for Nicole has continued to climb. Last May, doctors found that she had osteoporosis, a condition that causes her bones to become fragile and is more common in the elderly. Something as simply as riding a train can be a challenge for Nicole; she is often asked to give up her seat since she is young, but it is hard to explain to someone that you have multiple diseases when they do not think you look sick.

If you would like to purchase a copy of Nicole’s book, click here.

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