Spina Bifida is NOT a Disease

Spina Bifida is NOT a Disease.

It is not contagious. It is not something that's developed later in life.

It's not something you can "recover" from. It cannot be cured. It is not (generally) life threatening. It does not have the same symptoms for all people.

Spina Bifida is something you are born with...or not. It's determined within the first several weeks of pregnancy and is a result of the spinal column not forming properly.

It's fair to call it a "condition" and it is often referred to as an "abnormality" or "birth defect", but to the person living with spina bifida or to the parent of a child with spina bifida it is Not a Defect or a DISEASE that they "suffer" from.

At least that's the way this mother sees it.

I just felt the need to clarify the issue a bit because I have read several well-meaning articles about spina bifida that refer to it as a Disease. I don't think anyone who knows my 6 year old daughter Adria, would refer to her as having a disease - not with her giant smile, witty remarks, social personality and confident strut. (Of course there are children who have diseases that still have these same great qualities!) Adria is like most children in many ways, except for a few unique challenges that are a result of being born with spina bifida.

But I realize that it is hard to understand. The fact that more than 160,000 Americans live with spina bifida makes it more common than most permanent birth "defects" (ugh, I don't like that term). Yet, spina bifida is still widely unknown and misunderstood.

A friend recently shared an interesting article with me about a mainstream, "celebrity couple" who has a beautiful daughter with spina bifida. The article highlighted a conversation with the mother Nicole Ari Parker about some of her daughter's challenges along with a special letter from the girl's father Boris Kodjo on her 10th Birthday. You can read the FULL ARTICLE HERE or watch this brief interview about their daughter Sophie.

I really enjoyed reading the article and relating to this couple and their daughter, especially the love and pride they obviously have for her. Even so, a line penned by the author stood out to me:
"Nicole opened up about their daughter’s disease last summer,"

I'm sure it was perfectly innocent and well-intended, but I couldn't help but wonder if tagging spina bifida as a "disease" irritated Sophie's parents like it did me.

To me, the term Disease implies a degenerative illness or sickness that significantly reduces one's quality of life and worsens over time. While some might believe that's the case with Spina bifida, it does not have to be. Many individuals with spina bifida lead long, fulfilling lives... even while dealing with the daily necessities of catheterization, leg braces and/or wheelchair mobility, medications and much more. There's no question that life with spina bifida is more difficult, but it should not be treated as a Disease.

As I read the article, I did not want to dwell too much on that one line. I loved the words that Sophie's father Boris wrote to her last week and felt that I could say the same for Adria:

"You’ve shown me what true strength and courage is and you taught me that the love of faith and the faith in love is one and the same.  I’m in awe of your ability to defy the odds and I marvel at the confidence with which you produce miracle after miracle. You smile your way through life and your light touches everyone around you."

We are blessed to be parents of incredible children, and we each have a daughter who happens to live with a condition called spina bifida but is not defined by it.

Adria strikes a pose in a new purple dress that she loves.

For more information on Spina Bifida, take a few minutes to read these posts:

WHAT EXACTLY IS SPINA BIFIDA

PREPARING FOR KINDERGARTEN

OCTOBER IS SPINA BIFIDA AWARENESS MONTH