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Recommended books about people with genetic disorders?

For my medical class I have to read a book about medical conditions, and I was wondering if there are some good books(non fiction) about humans dealing with some sort of genetic disorder (like cystic fibrosis, albinism, etc) and stories of how they live their lives.

I'm not looking for "textbooks" where it just tells about the types of genetic disorders in the world. I'm looking for the life stories of these people, how they live, how different it is for them to interact with others, etc..


1 Answer

  • Jonah
    Lv 7
    5 years ago
    Favorite Answer

    Yes, I have some great books to recommend for you! I spend lots of time reading books about experiences of disability and chronic illness. Here are some books either by people with genetic conditions, or by their parents, or others. I've chosen to only include definitively diagnosed genetic conditions rather than suspected ones.

    Books by parents:

    Little People: Learning to See the World Through My Daughter's Eyes by Dan Kennedy. This one is even available for free online as an e-book. His daughter is an achondroplastic dwarf.

    One Brief Shining Moment by Arlene C Swirsky- this is a very sad story about having a daughter die of familial dysautonomia.

    If a Tree Falls: A Family's Quest to Hear and Be Heard by Jennifer Rosner- both of Rosner's daughters were born with genetic hearing loss.

    Finding Magic Mountain: Life With Five Glorious Kids and a Rogue Gene Called FOP by Carol Zapata-Whelan- her son's affected.

    Babyface: A Story of Heart and Bones by Jeanne McDermott- her son has Alpert Syndrome.

    Choosing Naia: A Family's Journey by Mitchell Zuckoff- Naia was diagnosed prenatally with Down Syndrome.

    Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Nibley Beck- so was Adam.

    The Still Point of the Turning World by Emily Rapp- Rapp's son had Tay-Sachs disease.

    The Book of Kehls by Christine Kehl O'Hagan- her son had muscular dystrophy.

    Moonrise: One Family, Genetic Identity, and Muscular Dystrophy by Penny Wolfson- so do hers'.

    A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny by Amy Julia Becker- her young daughter had Down's.

    Matthew: A Memoir by Anne Crosby- Matthew did too.

    The Shape of the Eye: A Memoir by George Estreich- as does his daughter.

    Life with a Superhero: Raising Michael Who Has Down Syndrome by Kathryn U. Hulings- Michael does too.

    Down Is Up For Aaron Eagle: A Mother's Spiritual Journey With Down Syndrome by Vicki Noble- and Aaron.

    Adventures in the Mainstream: Coming of Age with Down Syndrome by Greg Palmer- his son too.

    Spelling Love With an X: A Mother, a Son, and the Gene that Binds Them by Clare Dunsford- her son has Fragile X.

    Out Came The Sun: One Family's Triumph Over a Rare Genetic Syndrome by Judith Scott- her daughter has an unbalanced translocation. The book is really depressed.

    Books by people with genetic conditions:

    Too Late To Die Young: Nearly True Tales From a Life by Harriet McBryde Johnson- Actually, I don't know if she had a genetic diagnosis, however, she had a type of spinal muscular atrophy. She died not long after the publication of this autobiography. She is one of the most important influences in the way I think about living as a disabled adult.

    Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen- this book is by a woman who tested positive for a BRCA mutation after her mother died of breast cancer.

    Count Us In by Jason Kingsley and Mitchell Levitz- Kingsley and Levitz have Down Syndrome.

    My Pet Virus: The True Story of a Rebel Without a Cure by Shawn Decker- Decker has hemophilia,and like almost every hemophiliac of his generation, he also has HIV and hepatitis.

    Breathing For a Living by Laura Rothenberg- Rothenberg died of cystic fibrosis before this book went to print.

    The Power of Two: A Twin Triumph Over Cystic Fibrosis by Isabel Stenzel Byrnes and Anabel Stenzel - a book by identical twins who have cystic fibrosis. Both have had transplants and are doing well.

    Intersex (For Lack of a Better Word) by Thea Hillman- Hillman has a rather unusual take on living with non-classical congenital adrenal hyperplasia.

    Orchid of the Bayou: A Deaf Woman Faces Blindness: The Kitty Fischer Story by Cathryn Carroll and Catherine Hoffpauir Fischer- she has Usher Syndrome.

    Ordinary Daylight: Portrait of an Artist Going Blind by Andrew Potok- Potok has retinitis pigmentosa as did a grandparent and his daughter

    Slackjaw by Jim Knipfel- has RP as well.

    By friends,spouses, etc.

    My Foreign Cities: A Memoir by Elizabeth Scarboro- about her husband with cystic fibrosis

    Carrier: Untangling the Danger in My DNA by Bonnie J Rough- I didn't like this one. Her father and brother have an X-linked disorder.

    Words In My Hands: A Teacher, A Deaf-Blind Man, An Unforgettable Journey by Diane Chambers- she had a student with Usher's type III.

    My Maggie by Rich King- his wife has Usher Syndrome.

    Although neither he nor any family members of his have genetic disorders, I recommend the works of geneticist Robert Marion. I concur with much of what he says EXCEPT regarding XYY Syndrome and Marfan's (I know people with Marfan's and I strongly disagree about how strange they look).

    I also like anthologies about disability. The only ones I know of that are ONLY about people with genetic disorders are by parents of people with Down Syndrome.

    If none of these are quite what you want, give me more specifics and I can find it.

    • Thank you so much!! This is exactly what I needed.

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