As some of you may know, if you’ve taken time to read my blog, or even glanced at the title, I was born with spina bifida. Increasing awareness of this disability (and others) is one of the most important things in my life right now and has been for about 12 years, since I graduated from high school and now that I’m “out there” on the front lines and see the kind of crap disabled people have to deal with on a daily basis. When I was younger, my family and some of our friends participated in five or six walks to promote community awareness for spina bifida and birth defects. These walks, known as “Walk America” back then (not sure what they’re called now) were sponsored by the March of Dimes and brought the entire community together one Saturday for about a six-mile walk and cookout to let people know how important it is to reduce birth defects in babies so they can lead happy, healthy, productive lives.
Although I didn’t really understand what the walks meant since I was so young, looking back I would give ANYTHING to get a group together and walk from Georgia to Florida if I had to, so the world realizes people with disabilities are people too and deserve to let our voice be heard. That’s why I am so blessed and honored to have met the lovely, beautiful and absolutely AMAZING Laura Tellado on Twitter several months ago. We talk at least once a week on Twitter, and it’s truly remarkable how much she cares about spreading awareness of spina bifida in the Latin community. Laura has given me the strength to keep fighting for spina bifida and my rights as a person with a disability, and I am really honored to be able to take part in a “blog carnival” by re-posting this amazing article by Laura. She’s trying to raise money for a “Walk-N-Roll” she’s participating in soon, so if you feel it in your heart to give, please give as much as you can. Every little bit helps. From the BOTTOM of my heart, thank you. I know Laura thanks you too!!! 🙂
October is an eerie month, filled with monsters, mummies and the macabre. But while the occasional witch or skeleton might freak you out, one must concede that there are indeed more frightening things–like finding out your child will be born with spina bifida.
And yet, each day in the U.S., an average of eight families welcome a child with spina bifida into the world. An estimated 1,500 infants are born with spina bifida each year in the U.S.
I was born with spina bifida nearly two and a half decades ago. The diagnosis came as a total shock to my family, along with an entire set of secondary complications. I was also born with hydrocephalus, or “water on the brain.” During the first 10 years of my life, it seemed I was in the hospital every other week with a bladder infection or shunt malfunction. I’d be lying if I said this wasn’t really scary at times.
But then, when I was 10 years old, I discovered a fantastic way to defeat my worst fears– knowledge. I vowed I would educate myself and read up on the condition that, up until that point, seemed to be taking over my life. Much like a child who imagines a ghost is in his closet, grabs a flashlight and realizes it’s only an old coat, I had come to the realization that, when you take the time to learn about something, no matter how terrifying it may seem at first, everything is less scary in the light of knowledge.
According to the Spina Bifida Association of America, “spina bifida remains the most commonly occurring birth defect in this country.” Just how common is it overall? PubMed Health, the website of the U.S. National Library of Medicine, reported in March of this year: “Myelomeningocele [the most severe form of spina bifida] may affect as many as one out of every 800 infants.”
As a 21-year member of the Spina Bifida Association of Central Florida, I’m doing my part to shed light on this condition by raising money for the Walk-N-Roll For Spina Bifida. When my parents and I moved from Puerto Rico to Orlando, Florida in search of better educational and healthcare opportunities for me in 1990, we found a support system away from our family and homeland in joining the SBACFL. My personal search for a public spokesperson for the spina bifida cause, as well as my work as a current member of the SBACFL board of directors, have helped me find my true purpose– galvanizing as many people as possible to support the spina bifida community.
So, in the spirit of shedding light on a little-known condition, and in honor of October, which is Spina Bifida Awareness Month, here are some statistics about spina bifida that might spook you a bit:
- Spina bifida is more common than muscular dystrophy, multiple sclerosis and cystic fibrosis combined.
- Latinos have the highest incidence of spina bifida out of all the ethnic groups.
- Ireland has the highest incidence of spina bifida in the world.
- About 50 percent of babies with spina bifida are selectively aborted after being diagnosed with spina bifida.
- Doctors recommend that every woman of childbearing age consume 400 micrograms of folic acid daily to help prevent neural tube defects like spina bifida up to 70 percent of the time. In spite of this, there are currently an estimated 166,000 people in the U.S. living with spina bifida– up from just 76,000 just last year.
- About 90 percent of people with spina bifida are also born with hydrocephalus. Many need a shunt inserted near the brain to drain the excess cerebrospinal fluid– and many require multiple shunt replacements during their lives.
- Other very common secondary conditions include bladder and bowel incontinence, as well as frequent urinary tract infections.
- After the onset of puberty, young people with spina bifida are more prone to clinical depression than most people. Researchers think this may be in part because of social isolation.
Being able to share this information with all of you today is without a doubt the most empowering and inspiring aspect of my life. I’d love nothing more than to give you that very sense of empowerment. Please publish this post on your own website(s) and feel free to add your own personal intro that will make it relevant to your blog followers. As many people as I’ve managed to rally in support of this cause, you have an advantage that I don’t–your audience. So, please share this information with everyone you come into contact with.
I will be raising money online for Team Holdin’ Out for a Hero until October 29, when we have our Walk-N-Roll event. Donations can be as small as $5 or as large as $50,000. (Yes, I do like the $50,000 better!) Every cent counts! Every cent of every dollar will support families affected by spina bifida in 22 counties in and around the Central Florida region and supporting educational and awareness efforts.
Yes, to the new parent, or even to the already-grown individual, spina bifida can seem like a scary thing to deal with. But there’s a power in numbers and a strength in awareness– a strength that gives us the courage to open the closet, shine the light in the ghost’s face and reduce it to nothing but an old coat.
Thank you for helping me conquer my biggest fear– ignorance of spina bifida.