2018 De Lange Syndrome and BWS Reunion

The families of Cornelia de Lange Syndrome (CdLS) and Beckwith Wiedemann Syndrome (BWS), a total of 33 people, were invited to a reunion at Taipei Women’s Center on September 9th. Although the clinical symptoms between the two diseases are varied, they all have problems such as autism and emotional treatment. Therefore, we invited Dr. Lin Liang-Yin to give a speech and share what the parents should do according to the emotional and behavioral problems that the rare disease patients may have.

The CdLS patients are commonly seen with growth retardation and short stature. Their typical facial features include long eyebrows, one-line eyebrow, long eyelashes, short and upturned nose, thin and downturned lips, etc. They are also varying degrees of mental retardation. Dr. Lin, who has been clinically treating patients with CdLs syndrome, shares how to distinguish the strength of the children’s sensory perceptions in order to train their ability to receive external messages and to respond.

Patients with BWS are characterized by excessive growth before and after birth, macroglossia and abdominal wall defect, and some patients have been diagnosed with autism during their growth. Explain how to conduct psychological adjustment and emotional processing.

Dr. Lin also aimed at such patients and explained how to cope with the emotional processing and conduct the mental adjustment during the process of the patients’ interpersonal and parent-child interactions.

Dr. Lin, who has plenty of experiences in child psychological counseling reminds that while we are processing the periodical emotional treatments, the medication is one of the powerful aids. To change the behavior problems of these children, we have to pay attention to building good relationships, for example, the accompany of parental companionship, interpersonal interaction, etc. In order to promote better interaction opportunities between patients and the environment. The families who attended this activity suffer from different diseases but faced the same difficulties of taking care of the patients, so they also seized the opportunity to learn more from Dr. Lin.

Translator: Ellen Kuo (OI), Reviewer: Joy Yin