Get our Best Book Club Books of 2025 eBook!

Tay-Sachs Disease

Summary |  Excerpt |  Reviews |  Beyond the Book |  Read-Alikes |  Genres & Themes |  Author Bio

The Still Point of the Turning World by Emily Rapp Black

The Still Point of the Turning World

by Emily Rapp Black
  • BookBrowse Review:
  • Critics' Consensus (4):
  • Readers' Rating (1):
  • First Published:
  • Mar 7, 2013, 272 pages
  • Paperback:
  • Feb 2014, 272 pages
  • Rate this book

About This Book

Tay-Sachs Disease

This article relates to The Still Point of the Turning World

Print Review

At the age of nine months, Emily Rapp's son Ronan was diagnosed with a deadly disease called Tay-Sachs. The disease is caused by the lack of a vital enzyme called hexosaminidase-A (Hex-A); the result is a progressive buildup of a fatty substance in nerve cells that causes destructive neurological decline and eventually death. There is no cure. A baby with Tay-Sachs can appear "normal" up until six months, although the disease is present even in the fetal stage; at that half year point, however, any developmental progress begins to decline, and the child who could once crawl or babble is eventually unable to see, move, or even hold his or her head upright.

NTSAD Tay-Sachs is a genetic disease, named for Warren Tay, a British opthamologist who, in 1881, first identified a characteristic red spot on the retina, and Bernard Sachs, a New York neurologist who, a few years later, described the cellular changes of the disease. Many people know that Tay-Sachs is prevalent in the Ashkenazi Jewish community, in which 1 in 27 people is a carrier of the disease (both parents must be carriers in order for a child to develop the disease). But, as Rapp points out in her memoir and in an earlier essay on Salon.com, the common screening tests done for Tay-Sachs look for the specific mutations common to the Ashkenazi Jewish variant of the disease, and fail to check for the more than eighty other mutations that can result in the disease - including the variant that Rapp herself carries.

The National Tay-Sachs and Allied Diseases Association is the primary patient and family advocacy group devoted to providing support for patients and their families and advocating for additional research into this rare but fatal condition. Their website provides a great deal of information about the disease as well as summaries of current research, ideas for how the public can get involved, and conferences, discussion groups, and other advice and support for families.

Filed under Medicine, Science and Tech

Article by Norah Piehl

This "beyond the book article" relates to The Still Point of the Turning World. It originally ran in March 2013 and has been updated for the February 2014 paperback edition. Go to magazine.

This review is available to non-members for a limited time. For full access become a member today.
Membership Advantages
  • Reviews
  • "Beyond the Book" articles
  • Free books to read and review (US only)
  • Find books by time period, setting & theme
  • Read-alike suggestions by book and author
  • Book club discussions
  • and much more!
  • Just $60 for 12 months or $20 for 3 months.
  • More about membership!

BookBrowse Book Club

  • Book Jacket
    The Mysterious Bakery on Rue de Paris
    by Evie Woods
    From the million-copy bestselling author of The Lost Bookshop.

Members Recommend

  • Book Jacket

    The Fairbanks Four
    by Brian Patrick O’Donoghue

    One murder, four guilty convictions, and a community determined to find justice.

  • Book Jacket

    One Death at a Time
    by Abbi Waxman

    A cranky ex-actress and her Gen Z sobriety sponsor team up to solve a murder that could send her back to prison in this dazzling mystery.

  • Book Jacket

    Happy Land
    by Dolen Perkins-Valdez

    From the New York Times bestselling author, a novel about a family's secret ties to a vanished American Kingdom.

  • Book Jacket

    The Seven O'Clock Club
    by Amelia Ireland

    Four strangers join an experimental treatment to heal broken hearts in Amelia Ireland's heartfelt debut novel.

Who Said...

When I get a little money I buy books...

Click Here to find out who said this, as well as discovering other famous literary quotes!

Wordplay

Solve this clue:

A C on H S

and be entered to win..

Your guide toexceptional          books

BookBrowse seeks out and recommends the best in contemporary fiction and nonfiction—books that not only engage and entertain but also deepen our understanding of ourselves and the world around us.