Education has always been a key component of this organization's mission, essential for helping parents and professionals make important decisions affecting the individuals with CdLS for whom they care. Myths are an unavoidable consequence of creating awareness of a syndrome about which few people know. In order to clear the air, we will tackle some of these myths head-on. We know that many readers are familiar with these myths and have worked to dispel them in their own communities. Still, we hope you'll read this article and maybe learn something new to continue to spread the truth about CdLS.
Myth #1: CdLS is a terminal condition - The belief that everyone with CdLS dies as a result of the syndrome appears to be widely held, both by professionals as well as laypersons. The question "How long do people with CdLS live" is almost universal when speaking to people unfamiliar with the syndrome. It seems natural to assume that a condition as serious as CdLS would result in death. Truth is CdLS is not terminal. A large percentage of the known CdLS population is aging predictably, requiring the Foundation to increasingly address issues of adults with CdLS.
Myth #2: CdLS is the result of something the mother did during her pregnancy -Some parents have been told that children with CdLS resemble children born with fetal-alcohol syndrome and have been made to feel guilty about their child's condition. Few things can be more traumatic to a new mother than the belief that something she did while pregnant caused her unborn child harm. CdLS is in NO WAY a result of anything a mother may have done, omitted, ingested, or experienced during her pregnancy. A random genetic change does not know or care where it occurs. CdLS occurs randomly in children of parents of all ages and ethnicity.
Myth #3: Children with CdLS will never walk if they don't walk early (in childhood) - Many children with CdLS experience a delay before achieving traditional milestones such as sitting up, rolling over and walking. There have been several instances where children with CdLS walked for the first time only after reaching their teens. SAC member and orthopedist, Dr. Thomas Renshaw of Yale University, states, "the delay in walking has more to do with neurological challenges such as delays in general development, fine and gross motor skills, and central nervous system factors influencing coordination and balance (than orthopedic problems)...The large majority of those with CdLS will walk." If a child's walking is delayed, he or she should be evaluated by a pediatric neurologist or orthopedist familiar with CdLS if the family pediatrician has little experience with children having the syndrome.
Myth #4: All people who have CdLS have limb differences - Only about a quarter (25%) of the known people with CdLS have limb differences (usually in the form of elbow contractures or missing digits), certainly not a majority and a poor criterion to use when trying to establish a diagnosis of CdLS.
Myth #5: A child with CdLS need only be checked for reflux once - Experts in gastrointestinal medicine and CdLS estimate that some type of reflux may occur in at least 85% of individuals with the syndrome sometime during their lives. GI reflux is a serious condition that may result in pain, a reluctance to eat, aspiration (inhaling food or liquid into lungs), esophageal and/or dental damage, insomnia (sleep disorder), and behavior problems. While an initial examination may reflect no evidence of reflux, repeated evaluations are advisable when there is a behavioral change since reflux may begin at any time in a person's life. Reflux may be "silent" and difficult to identify without proper medical expertise.
Myth #6: There are no GI Reflux options for my child other than surgery - Many families have successfully turned to surgical procedures to combat reflux over the years. Recently, treatment through medication has been refined so that it is being increasingly used as the first line of treatment. In some cases, medication is the only treatment necessary to control reflux.
Myth #7: Foundation services aren't suited to a mildly-affected child like mine - Some parents of children who are mildly affected with the syndrome express a hesitancy about becoming involved in Foundation events and programs. They may believe their children won't ever need Foundation services or they feel guilty participating in events when their child is not as severely affected as other children present. The Foundation is prepared to assist any family who requests our help, regardless of the diagnosis, severity, or prognosis for their child. The variation in ability of those affected by CdLS strengthens our organization, as does the participation of all caregivers. People with CdLS, regardless of severity, have something to teach all of us. Nearly everyone can be matched with others who have something in common in order to listen, learn and share.
Myth #8: In this age of the Internet, everyone can find out about CdLS right away - Well, perhaps they CAN, but whether or not they WILL depends a great deal on awareness efforts. Many people still do not have Internet (computer) access and if they live in a rural location, the availability of a geneticist may be limited. If their child is born with a milder case of the syndrome, she or he may not receive a diagnosis or referral by the family doctor. And, as many readers know, many doctors often are not any more familiar with CdLS than parents. Attention to CdLS awareness is as pressing now as it ever has been. As many as 10,000 people with CdLS could be living in the United States without the benefit of a diagnosis or the programs and services that the Foundation can provide.
Myth #9: The CdLS Foundation was started by experienced professionals - The organization's founders are exceptional people, but there is little difference between them and the parents who form the backbone of the CdLS Family today. A little over 20 years ago, a group of parents determined what was needed to incorporate this Foundation and to start providing services for families and professionals alike. The founders did some things right, some wrong, and learned in either case. Eventually, enough money was earned, given, and saved to hire professional help. Regardless, this organization owes its originality and character to dedicated amateurs who got needed work done.
Myth #10: I can't afford to be a Foundation volunteer or board member - It is true that many Foundation volunteers, whether they are coordinators (regional or awareness), fundraisers or board members, put in many hours of service to the organization and that they often donate their efforts and travel expenses to the Foundation as part of their commitment. However, Foundation volunteers have always been the Foundation's unpaid staff; their dedication is the strength of our organization. The vast majority of coordinators and board members have been parents of children with CdLS. Their commitment to lead and serve, not the size of their wallets, has been their common denominator.