Salud Saturday: Latinos with Spina Bifida: It Takes a Pueblo

If someone were to ask you today what condition is ranked the #1 cause of paralysis, what would you answer? Muscular dystrophy? Multiple sclerosis? Another auto-immune disorder, perhaps?

Try Spina Bifida. With 166,000 people living in the U.S. with Spina Bifida, it’s the primary natural cause of paralysis in children in America. It is also more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

What if I were to tell you that Latinos have the highest incidence of this condition, out of all the ethnic groups? Then, it hits close to home.

For me, Spina Bifida has never been just a numbers game—it’s always been personal. Since the day I was born in 1986, in San Juan, Puerto Rico, and the doctor announced gravely that I had myelomeningocele, the medical term for Spina Bifida, it has remained personal for my family. In Latin, Spina Bifida means “split spine.” So I was born, quite literally, with an aperture in my spinal cord.

The spine of a fetus develops within the first 28 days of the gestation period. Basically, this means that before a woman even finds out she’s pregnant, Spina Bifida is already there, in 7 out of every 10,000 live births. Great strides are being made in preventing neural tube defects such as Spina Bifida. The latest of these has been the recommendation that women of childbearing age consume 0.4 milligrams of folic acid daily. It’s a B-vitamin that has been proven effective in preventing up to 70 percent of cases of Spina Bifida. But, it needs to be taken months before becoming pregnant, so obviously, this isn’t a foolproof solution.

In 1990, my parents and I moved to Orlando, Florida in search of better opportunities for me—both medical and educational. They realized I might have a better quality of life in the U.S. Fortunately, we all adapted very quickly to the pace and culture of our new environment. I learned English fluently, while keeping my Spanish, too.

I believe our smooth transition to our lifestyle in the U.S. enabled us to find the adequate resources we needed for my healthcare. Still, many Latino families move to the U.S. and find it challenging to discover what resources are available to them. Many are unaware that there exists a national Spina Bifida Association with resources both in English and Spanish.

With lots of love and attention from my parents and teachers in pre-school, I was soon mainstreamed in a “regular school,” and have gone on to get my Bachelor’s degree from the University of Central Florida.

Early intervention is key for children (both unborn and born) with Spina Bifida. I was among the 90 percent of children with Spina Bifida who have hydrocephalus, commonly termed “water on the brain.” Without the surgical implantation of a shunt to drain the cerebrospinal fluid, I could have acquired serious brain damage—or died.

Like many people who have spinal cord injuries or some degree of paralysis, I’ve dealt with bladder and bowel control issues. Some of these issues required additional surgeries. In total, I’ve had 19, from head to toe.

What’s important to remember about me is that mine is a “success story.” I may not be the “best off” in every since of the word, but when it comes to Spina Bifida, I’ve been very fortunate with the circumstances I’ve grown up in. In spite of all the perceived “obstacles,” I’ve graduated college and am living a fairly healthy lifestyle.

In August 2009, I started a blog titled Holdin’ Out for a Hero in order to generate public awareness of Spina Bifida. What started as an individual’s initiative to enlighten the media and celebrities about the need for a public spokesperson for this cause, has evolved to include the mission of fostering a “community” of people who are affected by Spina Bifida.

Shortly after starting my blog, I discovered Twitter. (It was only a matter of time, right?) There, I connected with members of the Latinos in Social Media (LATISM) community, and found my online home. A longtime member of the National Association of Hispanic Journalists myself, I found a true kinship with others who, despite not knowing initially what Spina Bifida is, have learned from me, as I have from them. Together, we exalt each other’s causes; promote each other’s platforms!

About 50 percent of children with Spina Bifida are aborted. Knowing of the high incidence rate among the Latino population, I’ve often wondered if enough has been done to educate Hispanic people about the possibilities a child with Spina Bifida can have. These are children who are not being given the chance to show their potential.

I often stop and wonder how many of these children would have been like me, with fire in their hearts and their souls ablaze with passion for a cause.

I will probably never know for sure. What I do know is that I am the product of the people in my community, Latino and otherwise, who have invested time, hope and love in my life.

They say it takes a village to raise a child. That rings true to me, now more than ever, as I feel I have entered uncharted territory in the realm of social media. Little by little, my friends and mentors guide me toward the path of enlightenment. They’re the ones who help me carry the torch of my cause when I feel discouraged.

And for all of those children, especially Latino children, with Spina Bifida? Who is their village? We are. Let us all get educated about this condition, and reach out to those who don’t know where the resources are. Someday, I hope, I will see the fruit of investing in the promotion of awareness of Spina Bifida. After all, it is my ever-growing pueblo of cheerleaders and supporters who continue to fuel my efforts today.

ABOUT LAURA TELLADO: Laura is a journalist/blogger from Puerto Rico dedicated to generate public awareness of Spina Bifida, a neural tube defect of the spinal cord that is the #1 cause of paralysis in children in America. Follow Laura on Twitter @Laurita86. Read more about her campaign at her blog: http://holdinoutforahero.org/
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