Spinal Bifida Association Celebrates National Awareness Month

Philadelphia, PA — The Centers for Disease Control and Prevention (CDC) has released new data indicating the number of people living with Spina Bifida in the United States is over 180,000 – more than double the previous estimate of 70,000.

Spina Bifida remains the most commonly occurring complex birth defect occurring in this country; it has no known cause. In recognition of the need for more education about Spina Bifida and research into its treatment and prevention, Spina Bifida Association (SBA) is announcing October as Spina Bifida National Awareness Month.

The birth defect occurs during the first month of pregnancy when the spine of a baby fails to close which can lead to paralysis and many other permanent problems.  Eight babies are born every day in the United States with Spina Bifida or a similar birth defect of the brain and spine.

Spina Bifida is not one condition; it is a multitude of problems that affect the mind, the body and the spirit.  Advancements in treatment and prevention, however, have opened new doors for those with Spina Bifida. While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

The root cause of Spina Bifida is unknown and the effects for each person are different.  Hispanics have an abnormally high rate of diagnosis; Hispanic mothers are one-and-a -half to two times more likely to give birth to a child with Spina Bifida than non-Hispanic Caucasians.

Chelsea is a 19 year old young lady living with Spina Bifida in Montgomery County.  Her diagnosis was discovered in utero through a routine ultra sound.  The doctors suggested the family abort the pregnancy.  After Chelsea was born life was not easy for her.

At 6 weeks of age the doctors told her parents that she may not live another week.  Chelsea was a fighter back then, because she went through numerous surgeries that first year, including a tracheotomy.  What a celebration for the family when she turned one.  At age 3 Chelsea was able to have her trach removed.

Throughout her life Chelsea has water skied, snow skied, wheelchair danced, played wheelchair basketball, became a young competitive swimmer, and found her true love, horses.  Chelsea rides weekly at Sebastian Riding Associates and in the past won 1st place in Harrisburg at the 4-H Horseshow as an adaptive rider.  She loves life, has a boyfriend, and is working in a career study program at North Penn High School.

“I don’t like when people tell me I have a disease.  You can’t catch Spina Bifida.  I was born with a physical disability called Spina Bifida.  It’s not easy being disabled, but I want to be treated like everybody else.” says Chelsea.

The Spina Bifida Association of Delaware Valley is hosting a Spina Bifida Benefit Bash, Sponsored by SB Genetics, on October 24th from 8pm to Midnight at Bridgemen’s Hall at Iron Workers Local Union 401, 11600 Norcom Road, Philadelphia, 19154. Tickets are $30 per person and include dinner, live music, dancing, beer, wine, and soda.  Funds raised at this event go toward educational programs and financial assistance for medical supplies to improve the lives of individuals living with Spina Bifida in the Delaware Valley.

The Spina Bifida Association of Delaware Valley is a regional charitable organization dedicated to support people with Spina Bifida and their families through education, advocacy, and service.  SBADV was founded in 1972 to address the needs of the Spina Bifida community and serves 8 counties in southeastern Pennsylvania and New Jersey.  The Association is a member of the only national organization solely dedicated to advocating on behalf of the Spina Bifida community.  For more information on Spina Bifida please visit SBADV’s Web site: www.sbadv.org.

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