Five books on rare diseases

A rare disease affects a small percentage of the population. Reportedly, about 7,000 rare diseases have been identified globally and they disproportionately impact children. Metrolife’s reading list zooms in on a few such diseases and inspiring stories of patients and their caregivers. This year, World Rare Disease Day will be observed on February 29.

Chasing My Cure

Author: David Fajgenbaum 

In this 2019 memoir, American immunologist David Fajgenbaum pens down his
battle with Castleman disease and his relentless pursuit to find a cure. The disease affects lymph nodes and related tissues. In between hospitalisations, Fajgenbaum studied his blood samples, approached other Castleman patients, and contacted patients in a bid to unlock a treatment. According to the bio, a treatment he identified has induced a tentative remission.

The Family Gene

Author: Joselin Linder 

This 2018 book chronicles a young woman’s discovery of a genetic disorder in her family. After doctors diagnose a fatal blockage in her liver, she starts comparing medical charts of her father, uncle and great grandmother who had died from a mysterious disease. She approaches genetic researchers at Harvard Medical School and learns that 14 of her relatives carried something called a private mutation. The book also explores the potential of genomic medicine.

My Little Epiphanies

Author: Aisha Chaudhary

The book documents Delhi teenager Aisha Choudhary’s journey with Severe Combined Immune Deficiency. When her condition worsened in 2014, she turned to writing as a coping mechanism and hoped the book would inspire others like her. On January 25, 2015, Aisha departed from this world. She was 18.

The Still Point of The Turning World

Author: Emily Rapp

Published in  2013, it chronicles a young mother’s journey of raising a terminally ill child. Emily’s son was diagnosed with the degenerative Tay-Sachs disease when he was nine months old. His short life (he passed away shortly before his third birthday) taught Emily and her husband to love and live in the moment.

You’ll Miss Me When I’m Gone

Author: Rachel Lynn Solomon

This is a fiction novel for young adults. It tells the story of 18-year-old twins Adina and Tovah. While Adina wants to become a soloist, Tovah wants to join the Johns Hopkins School of Medicine. A genetic test for Huntington’s disease turns their life upside down — one tests negative while the other tests positive. The book celebrates the bond between the two sisters.