November is 22q Awareness Month.
One in every 2,000 to 4,000 children born and 1 in 68 children born with congenital heart disease has 22q11.2 Deletion syndrome (22q). The number of symptoms (nearly 200) and their level of severity can vary greatly from one child to another and are not always evident at birth. It is the second most common genetic disorder, yet it is practically unheard of in Kentucky.
Why is this important? 22q is more commonly diagnosed as DiGeorge syndrome (DGS) or Velo-cardio-facial syndrome (VCFS). 22q can affect every system in the body, therefore it is important that doctors in all disciplines eliminate use of these old titles and render an accurate and timely diagnosis of 22q.
The 22q Family Foundation, a nonprofit organization dedicated to raising awareness of 22q, provides much-needed support and many valuable services and resources free to families affected by the disorder. Among them are private consulting services to help foster a collaborative working relationship between families and schools; scholarships for young adults in their search for a continuing-education program; and an extensive online library of information, videos and webinars.
Kentucky families who’ve received a diagnosis other than 22q may not be aware that these services are available to them.
Together we can spread the word and help those individuals with 22q become as successful as they can be.