What are important things caused by CdLS to take into account for Transition

The vast majority of individuals diagnosed with CdLS are intellectually delayed with the degree ranging from mild to severe. Learning disabilities and severe language delays are often present.

Although relatively rare, there are people with CdLS who have borderline to low average cognitive function.

Small stature and small head size are characteristics. Typical facial features include eyebrows that meet in the middle, long eyelashes, a short-upturned nose and thin downturned lips.

Gastroesophageal reflux disease is common. Other possible medical issues include heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences — including missing arms, forearms or fingers — occur in about a quarter of individuals with CdLS.

Behavioral, communication and cognitive challenges often exist. The most mildly affected may only need minimal assistance from family and public agencies, while the more  severely affected will likely require assistance with some or all tasks of daily living, as well as supported work or day program environments. Individuals with CdLS frequently have speech and language deficits resulting in difficulty communicating. They often benefit from visual support to help with understanding and expressive communication. Many individuals with CdLS have difficulty processing certain kinds of sensory input and may find certain noises or touches disturbing. They may also seek out other sensory input, appearing to crave it.

Some people with CdLS may have difficulty modulating their emotions and get very upset with relatively small triggers. Additionally, they may need extra time to recover once upset.

A significant percentage of people with CdLS are also diagnosed with autism spectrum disorders. In that case, a professional with autism expertise is an integral part of the therapy team.

Bonnie Royster

The Cornelia de Lange Syndrome (CdLS) Foundation (USA) provides a host of services for anyone touched by this little-known genetic syndrome and other isolating conditions. Learn more about us, visit cdlsusa.org

Source:

The CdLS USA Foundation Adult Transition, published on 1 dec. 2019

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Senest ændret af Gerritjan Koekkoek den 2022/09/15 14:12

Oprettet af Gerritjan Koekkoek den 2022/09/15 14:12