Williams syndrome is a multi-system disorder affecting many parts of the body. A genetic condition, it is caused by a section of a missing chromosome (a strand of DNA).
People with Williams syndrome have distinctive physical features and learning limitations. They may also have issues with their blood vessels and vital organs, including the stomach, heart, and kidneys.
Williams syndrome can affect many aspects of daily life, but with the intervention of a home caregiver, people with the condition can live to their fullest potential.
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What Is Williams Syndrome?
It is a genetic condition resulting from changes at the chromosomal level, often involving missing or extra parts. It results when up to 28 genes are deleted on chromosome (a strand of DNA) 7 (Source: ScienceDirect). The disorder causes developmental delays and learning problems (e.g., difficulty recognizing space and numbers).
Supravalvular aortic stenosis (SVAS), a type of cardiovascular disease involving a narrowing section of the aorta, commonly affects people with Williams syndrome (Source: National Library of Medicine).
According to the Williams Syndrome Association, 30,000 Americans are living with the condition. It affects men and women at equal rates.
What Are the Symptoms of Williams Syndrome?
Williams syndrome delays children’s reaching developmental milestones (things most children can do by a certain age). Children struggle with math, language skills, and decision-making as they grow up, making daily living challenging. Often, adults will need home care to live as independently as possible.
Each person with this condition is an individual, but many features are more common in people with Williams syndrome, including:
· Feeding issues
· Learning problems
· Heart disease or blood vessel (cardiovascular) problems
· Speech difficulties
· Distractibility (getting distracted easily)
· Trusting strangers
· Kidney problems
· Dental issues
Physically, people with Williams syndrome will typically have full cheeks, large ears, and a broad forehead. Growth delays might also contribute to short height.
Only a doctor can diagnose a person as having Williams syndrome. The FISH test, a unique genetic test, can detect the condition.
How Home Caregivers Can Support People with Williams Syndrome
Williams syndrome creates obstacles in life through developmental delays and learning problems. However, people with Williams syndrome can continue living at home with proper support. Home caregivers can be a lifeline for people with the condition because they allow them to remain in their communities.
Most people with the disorder live with a caregiver. A study of 70 adults with Williams syndrome found that the overwhelming majority lived at home and relied on a caregiver or family member for personal care (National Library of Medicine).
Consistent Schedules
People with Williams syndrome adapt to the demands of daily life best with consistency. Caregivers create predictable daily routines with structured instruction and clear expectations.
Visual schedules, represented on a simple chart with pictures, help people with the condition understand what is expected of them throughout the day.
Sensory Activities
Sensory activities are a valuable tool to address developmental gaps, as people with Williams syndrome have a shorter attention span. Sensory input with visual aids and tactile (touch) games with textures they know can help them regulate their alertness so they can focus on a task.
People with Williams respond exceptionally well to music; songs can help them gain attention when teaching new life skills.
Life Skills Training
Caregivers assist with the development of life skills. They gradually work with your affected individuals to build skills using simple, clear sentences. People with Williams syndrome become acquainted with self-care basics (e.g., dressing, personal hygiene, and chores around the home) from their caregiver.
Social Skills Development
Similarly, caregivers can help people with the disorder develop social skills while providing companionship. When someone affected with Williams syndrome learns the social skills necessary for everyday life, they can communicate, connect, empathize, negotiate, and befriend.
Caregivers role-play with clients to demonstrate these skills and the situations that require them.
A Final Note
Just as the condition affects many body parts, it affects many aspects of daily living. Home caregivers enable individuals who cannot fully care for themselves to stay home. They provide an avenue for people with Williams syndrome to receive the daily assistance they need while remaining in their communities.
