My client has Williams syndrome. Can you please tell me more about this condition?
Williams syndrome is a genetic disorder characterized by a mild mental disability, distinctive facial appearance, problems with calcium balance and blood vessel disease. People with Williams syndrome are also likely to have a long neck, sloping shoulders, limited mobility in their joints and curvature of the spine.
Williams syndrome is caused by an abnormality in chromosomes. Most individuals with Williams syndrome are missing genetic material on chromosome #7. No two individuals with Williams syndrome have exactly the same problems. The problems range from lack of co-ordination, slight muscle weakness, possible heart defects and occasional kidney damage. A person with Williams syndrome has a 50 percent chance of passing the disorder on to a child. It occurs in about 1 in 20,000 births.
- Mild to moderate mental delay
- Short stature relative to family
- Feeding problems including colic, reflux, vomiting (due to low muscle tone and poor gag reflex)
- Joint laxity that may progress to stiffness as patient gets older
- Developmental delay
- Initially delayed speech development may turn into relatively loquacious speech later and relatively strong learning by hearing
- Distractibility, attention deficit (ADD)
- Learning disorders, for example poor visual-spatial abilities
- Blood vessel narrowing including supravalvular aortic stenosis, pulmonary stenosis, and pulmonary artery stenosis
- Pectus excavatum (sunken chest)
- Clinodactyly (an inward bend of the small finger)
- Personality traits include being overtly friendly, trusting strangers, fear of loud sounds or physical contact and an affinity for music.
Children and adolescents with Williams syndrome are at high risk for hypertension, probably related to the alterations of large arteries. This may lead to hypertension. Most exercise prescriptions for hypertensive patients include a duration of 20 to 60 minutes of aerobic exercise at 40 to 70 percent VO2max performed three to five times a week. Several studies confirm the results of low to moderate training being just as efficient in lowering BP compared to high intensity (>70% VO2max) cardiovascular exercise. The fitness level of the individual may also play a central role in determining optimal intensity.
Types of cardiovascular exercises beneficial for Williams syndrome include swimming, walking, biking and low impact aerobics classes. Avoid jerky and bouncy movements and ensure there is a proper warm up and cool down.
When working or designing a cardio program for clients with Williams syndrome, it is very important that they take breaks when required and stay hydrated. I would also recommend having them wear a heart rate monitor to ensure their heart rate does not elevate too high. Cardio activities must be monitored. Perform talk test with participants to safely work them within their appropriate heart rate zones. A good working zone for them is between 60 and 70 percent of their target heart rate.
Yoga and Pilates
Also recommended for those who suffer from Williams syndrome is yoga and Pilates to help alleviate stiff joints. Yoga and Pilates classes will also help to improve muscle tone, strength and range of motion. Avoid inverted postures or postures where the participant gets up too quickly. Work with yoga postures that will open them up for better posture, such as chest openings, hip openers, back and hamstring stretches. Take extra caution with any backbends due to the curvature of the spine (mentioned above). You may resort to exercises that are good for osteoporosis or scoliosis. Yoga balance postures are great as well, showing all options due to muscle imbalances. Core work is key to better posture, so pick some Pilates exercises that will help strengthen the core, such as the roll up, half roll back, criss cross and ab prep.
Before starting any yoga or Pilates work, a proper warm up should take place to prepare them, but again, avoid inversions due to blood pressure and dizziness and any postures where you get up quickly.
As Pilates focuses on alignment, clients with Williams syndrome may not be able to do or understand what a neutral pelvis is, so just ensure they are in a position that is not strenuous on the back and/or forcing the back to the mat. Depending on the individual, he or she may need a small prop under the head to assist with aligning the spine. When lying down, if the head tilts back and chin juts to the ceiling, place a small pillow or prop under the head.
Ensure participants are not over exerting due to hypertension. Work on endurance and toning to assist with daily lifting activities and maintain energy levels. Balance ball training is great for these individuals, starting small and building them up. Work with light weights first to ensure form is correct. After each set, take a one to two minute rest and ensure they stay hydrated. Eventually, strength increases, increase their repetitions and weights and perhaps even shorten the break in between sets. All this depends on the individual, as no two people with Williams Syndrome are alike.
It would be great if the client could work out at least three times per week, but this may not be possible so write a home routine that consists of a warm up, strength and core exercises, breathing exercises for anxiety and stretches that do not put pressure on the spine.
This is a very important topic, as clients with Williams syndrome can be over trusting and are especially friendly. They may want to offer you the world just for a smile. Try to maintain a professional relationship, ensuring the environment they are in is friendly and trust worthy. They must feel comfortable with you. Again, treat each client as an individual as some may have higher needs then others, meaning some may have worse developmental and mental delays then others. Have them fill out a Par Q or club liability form and get their doctor’s permission as well, prior to exercise. It may be beneficial to give a copy of the program you have subscribed to the physician or physical therapist for their review.
There is no cure for Williams syndrome, but people with this disability can lead a full life that includes living on their own and maintaining employment. Living an active healthy lifestyle with good nutritional values will assist with daily functions and activities. Also maintaining good cholesterol and a healthy body weight will add to their life span.
- A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission, http://www.adam.com
- Gavin C. Hillman and Len Kravitz, Ph.D. 2007, Hypertension and Exercise, www.unm.edu/~lkravitz/Article%20folder/hypertension.html
- 2008 Revolution Health Group LLC. www.revolutionhealth.com