Celebrating Rare Disease Month: You Might Be Surprised that Spina Bifida Is Considered a Rare Disease

 

Zhenya Yanovich

If you live in the spina bifida world, it probably doesn’t feel rare at all. When it’s part of your daily life, your community, your routines — it feels everywhere. But statistically, spina bifida is classified as a rare disease, affecting about 1 in 2,700 births in the U.S., and fewer in many other parts of the world.

That disconnect — between lived experience and public awareness — matters.

Spina bifida is a neural tube defect that occurs during early pregnancy, when the spine and spinal cord don’t fully form. It’s a lifelong condition, and like many rare diseases, no two experiences are the same. Some individuals walk independently; others use wheelchairs. Some have minimal medical needs; others require complex, ongoing care.

Access to knowledgeable care can be a major challenge — especially outside major medical centers. Families in rural or remote areas may struggle to find providers experienced in spina bifida across adulthood, not just pediatrics. Specialized clinics, trained caregivers, accessible housing, and adaptive services are often limited or nonexistent, forcing families to travel long distances or coordinate fragmented care on their own.

Across a lifetime, people with spina bifida may face:

• Multiple surgeries, sometimes beginning at birth

• Mobility challenges and chronic pain

• Bowel and bladder management needs

• Hydrocephalus and neurological complications

• Skin integrity issues and fatigue

• Barriers to education, employment, and accessibility

• Mental health challenges tied to stigma, isolation, or burnout

The impact ripples through the whole family.

Parents often become lifelong advocates — coordinating care, navigating school systems, fighting for accessibility, and planning for adulthood long before their peers have to. Siblings grow up learning adaptability, empathy, and independence early, while also carrying concerns about fairness, responsibility, and the future.

And still — there is strength here.

The spina bifida community is rich with knowledge, advocacy, humor, and resilience. People with spina bifida continue to push boundaries, redefine independence, and demand systems that actually work for real lives — not just medical charts.

This Rare Disease Month, we’re naming the truth:
Common or not, spina bifida deserves awareness, access, and lifelong support. Rare doesn’t mean unseen — and it shouldn’t mean unsupported.

💛 Meet Zhenya Yanovich, late illustrator at MSI Press -- and a spina bifida survivor. Born and raised in Siberia, he came to the USA for much-delayed surgeries as a teen. He later returned to Russia, to Moscow where his family had moved, and practices as a professional artist until his sudden death from an aneurysm at the age of 42.

MSI Press, a veteran-owned publishing house based in California, United States

best known for turning new writers into award-winning authors,
has gained mass recognition for releasing highly acclaimed books of varying genres
that are distributed internationally. Check us out on Wikitia.

To purchase copies of any MSI Press book at 25% discount,

use code FF25 at MSI Press webstore.

Want to read an MSI Press book and not have to pay for it?
(1) Ask your local library to purchase and shelve it.
(2) Ask us for a review copy; we love to have our books reviewed.

VISIT OUR WEBSITE TO LEARN MORE ABOUT ALL OUR AUTHORS AND TITLES.

Sign up for the MSI Press LLC monthly newsletter: get inside information before others see it and access to additional book content

(recent releases, sales/discounts, awards, reviews, Amazon top 100 list, links to precerpts/excerpts, author advice, and more)

Check out recent issues.

 

 

Follow MSI Press on Twitter, Face Book, Pinterest, and Bluesky. 

 

 

MSI Press welcomes submissions that reflect legacy and lived experience. Learn more about our publishing process on our website. We help writers become award-winning published authors, one writer at a time. We are a family, not a factory. Check our listing in Writer's Market, the most trusted guide to publishing.

Turned away by other publishers because you are a first-time author and/or do not have a strong platform yet? If you have a strong manuscript, San Juan Books, our hybrid publishing division, may be able to help. Ask us. Check out more information at www.msipress.com.

 

Planning on self-publishing and don't know where to start? Our author au pair services will mentor you through the process. See what we can do for your at www.msipress.com.

Interested in receiving a free copy of this or any MSI Press LLC book in exchange for reviewing a current or forthcoming MSI Press LLC book? Contact editor@msipress.com.

Want an author-signed copy of this book? Purchase the book at 25% discount (use coupon code FF25) and concurrently send a written request to orders@msipress.com.

Julia Aziz, signing her book, Lessons of Labor, at an event at Book People in Austin, Texas.

Want to communicate with one of our authors? You can! Find their contact information on our Authors' Pages.

Steven Greenebaum, author of award-winning books, An Afternoon's Discussion and One Family: Indivisible, talking to a reader at Barnes & Noble in Gilroy, California.

   

MSI Press is ranked among the top publishers in California.
Check out our rankings -- and more -- HERE.