President and CEO, Spina Bifida Association
Lives of people with spina bifida matter. It’s a simple but undeniable fact.
In today’s world with concerns about COVID-19, people are consumed with protecting life. There are debates raging that bring to light how the world views people with disabilities — and all too often those lives are seen as “less than” or “not as important.”
Some in this world cannot fathom how a parent can bring a child into this world knowing that the child will face a lifetime of adversity. It is a fact that some people actually believe this. But we know better.
People with spina bifida or any other disability bring so many wonderful things to our society. They bring strength, passion, joy, ideas, creativity, and countless other attributes that make life so full and interesting.
Are their lives hard? For most, probably so. But they bring a strong commitment to life. Most of them will not only live, but thrive, in situations that might make an able-bodied person shut down. They have lived through challenges most can not even imagine.
There may only be an estimated 166,000 people with spina bifida in the United States, but each of them deserves to have a voice in our society.
It is not acceptable that people with spina bifida lose kidney function at a young age. The fact that shunts and brain surgery are the only ways to treat hydrocephalus for people with spina bifida is unsatisfactory.
People with spina bifida die from sepsis from undiagnosed infections, and their families are left to try and understand how this happened. And it is definitely not tolerable that we lose children and adults with spina bifida to unknown causes.
These facts are why advocacy matters — it saves lives. Without it, there would be no National Spina Bifida Patient Registry at the Centers for Disease Control and Prevention. This is the only registry of its size in the world that is tracking treatments and outcomes.
Without this information, there is no way to know how to better treat people with spina bifida and to understand what brings about the best outcomes. Before this registry, no standardized treatment existed — no similar times to monitor test results, which tests to do, when to do them, and what the results mean.
Advocacy is a way to have a seat at the table, a way to fight for change, and a way to make a difference. If we want to continue to save lives and make sure the treatments are not worse than the condition, we have to fight to make that happen. It means lending your voice and your action to our efforts to ensure that children and adults with spina bifida are not lost in all of the struggles of today.
Be an advocate — your voice could save a life.