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Williams Syndrome

Williams syndrome is a rare genetic condition that affects the heart and blood vessels, learning, and personality. Many people are warm, outgoing and musical, and many also need lifelong heart checks, calcium and blood pressure monitoring, care around anesthesia, and support for anxiety. A genetic test confirms it, and a care team, therapies and school supports can help.

Get help right away for these. Williams syndrome often narrows the aorta, the large artery that carries blood from the heart to the body, and if that narrowing is not treated it can lead to shortness of breath, chest pain and heart failure (MedlinePlus Genetics).

  • Call 911 for chest pain that does not go away, crushing pain or pressure in the chest, or chest pain with nausea, sweating, dizziness or shortness of breath (MedlinePlus). Do not drive yourself.
  • Fainting is usually nothing to worry about, but it can signal a serious problem, and heart problems are one cause (MedlinePlus). Because WS so often involves the heart, tell your cardiology team promptly after any faint, and call 911 if it comes with chest pain or trouble breathing. See our Fainting guide.
  • Very high blood pressure. A reading higher than 180 over 120 is a hypertensive crisis, and MedlinePlus says to seek medical care right away. High blood pressure usually has no symptoms, so regular checks matter (MedlinePlus).
  • A seizure lasting longer than 5 minutes, or repeated seizures without waking in between, is a medical emergency (MedlinePlus).
  • Severe or sudden belly pain. Get medical help immediately for sudden, sharp belly pain, a stiff, hard and tender belly, vomiting blood or blood in the stool, or being unable to move the bowels especially with vomiting (MedlinePlus). Constipation and belly pain are common in WS, and diverticulitis (inflamed pouches in the colon) can appear at a much younger age than usual (Williams Syndrome Association), so do not assume “just constipation.” Diverticulitis pain is often sudden, in the lower left belly, with fever, chills, nausea or vomiting (MedlinePlus).
  • High calcium. In babies and young children, high blood calcium can show up as irritability, vomiting, constipation or poor feeding, though it is more often mild and silent (Stanley et al., 2021). Call the doctor the same day for these signs, especially during an illness with vomiting or poor drinking, since dehydration raises the risk. A calcium level above 11.5 mg/dL, or symptoms, call for an endocrinology or kidney specialist (Stanley et al.). Dehydration signs in young children include a dry mouth, no wet diapers for 3 hours and unusual sleepiness (MedlinePlus).
  • Before any sedation or anesthesia, including for dental work or imaging, tell the team about Williams syndrome. Sudden death in WS has been reported at 25 to 100 times the general rate, often linked to sedation or anesthesia (Kozel et al., 2021). See “Heart, blood pressure and anesthesia” below.

Caregivers and older teens in crisis: call, text or chat with the 988 Suicide & Crisis Lifeline, free and confidential, 24 hours a day (988 Lifeline).

Never wait for a chiropractic, acupuncture or massage appointment, or try an herb or supplement, for any of these signs.

What is Williams syndrome?

Williams syndrome (WS) is a developmental disorder that affects many parts of the body. It is characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features, and heart and blood vessel problems (MedlinePlus Genetics). People with WS typically find visual-spatial tasks such as drawing and assembling puzzles difficult, but tend to do well with spoken language, music and learning by repetition. They usually have outgoing, engaging personalities and take an extreme interest in other people (MedlinePlus Genetics). It is also called Williams-Beuren syndrome (Kozel et al.).

Estimates of how common it is range from 1 in 7,500 to 1 in 18,000 people (MedlinePlus Genetics). It occurs in all ethnic groups, in males and females alike (Kozel et al.).

What causes it, and does it run in families?

WS is caused by the loss (deletion) of a small piece of chromosome 7, at a spot called 7q11.23. The missing piece contains 25 to 27 genes (Kozel et al.). Loss of the ELN gene, which makes elastin, is linked to the connective tissue differences and the aortic narrowing (supravalvular aortic stenosis, or SVAS). Loss of other genes may help explain the visual-spatial difficulties and the behavioral profile, and people whose NCF1 gene is not deleted have a higher risk of high blood pressure (MedlinePlus Genetics).

Most cases are not inherited. The change usually happens at random when eggs or sperm form, in people with no family history (MedlinePlus Genetics). If a parent has WS, the chance of WS in each pregnancy is 50%. For parents who do not have WS, the chance of having another affected child is extremely low (Kozel et al.). A genetic counselor can walk through the chances for your family (MedlinePlus).

What does WS look like at different ages?

Babies and toddlers

Many infants with WS have prolonged colic, trouble feeding because of oral motor delays or sensitivities, and difficulty gaining weight (Kozel et al.). Reflux and irritability are also commonly reported (Boechler et al., 2024). In a Brazilian parent survey of 229 families, 83% reported colic and 69% feeding difficulty in the first year (Pires et al., 2021). Colic and slow weight gain can fade with time (Stanley et al.). A heart murmur is the usual way heart disease first shows up (Kozel et al.). Infants may have mildly high calcium; it usually appears between 6 and 30 months when it needs treatment (Kozel et al.).

The face is often distinctive, with a broad forehead, puffiness around the eyes and a small chin, and teeth can be small, widely spaced, crooked or missing (MedlinePlus Genetics). Children are on average shorter than expected, and WS-specific growth charts exist (Kozel et al.).

School age and teens

Adulthood

Adults with WS have more frequent and varied medical problems with age. The Nature Reviews primer lists heart and artery disease, obesity, diabetes, incontinence, hearing loss, poor oral health, digestive problems including diverticulitis, lower bone density and sleep apnea (Kozel et al.). Most adults keep living with a parent or relative; fewer than 10% live independently, and 38% to 54% work at least part-time, usually in a special arrangement (Kozel et al.).

How is WS diagnosed?

There is no newborn screening for WS. Doctors begin to suspect it from a pattern: a heart murmur, the facial features, high calcium, poor growth or feeding, and developmental delay (Kozel et al.). A suspected diagnosis should always be confirmed with genetic testing (Kozel et al.). Genetic tests use blood, saliva or other tissue (MedlinePlus). Chromosomal microarray is the only common method that does not require the doctor to suspect WS first, and it shows the size of the deletion (Kozel et al.). The Williams Syndrome Association adds that virtually all (98–99%) people with typical features have the elastin gene deletion, and that someone without the deletion does not have WS (Williams Syndrome Association).

In the United States and Australia, the median age at diagnosis has dropped to around 1 year since the 1980s, though in some countries it is still childhood (Kozel et al.). Noninvasive prenatal blood screening cannot detect WS, because it only finds deletions larger than 3 million DNA building blocks (Kozel et al.).

You are carrying a lot, and you are not alone. Mothers of children with WS report more anxiety and stress than expected and worry about the future, yet most also describe positives, including that the child brought joy and changed their outlook on life (Kozel et al.). This guide covers where to find support, including a California WS specialty clinic (Williams Syndrome Association).

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) A cardiologist-led, multi-specialty team (cardiology, genetics, endocrinology, kidney, audiology, dentistry, behavioral health) following a WS health-supervision schedule, plus early intervention, school services, speech, occupational and physical therapy, and treatment of anxiety, blood pressure, calcium, thyroid and blood sugar problems as they arise. There is no cure. Early intervention is free or reduced-cost with no doctor referral; school services are provided as a free appropriate public education under IDEA; Medicaid covers medically necessary care for enrolled children under 21; Medicare Part B pays 80% of the approved amount of medically necessary outpatient physical therapy after the deductible. Genetic testing, cardiology visits, WS clinic visits and surgery: cost estimate being researched. Care does not cure WS, but lifelong heart and blood pressure checks, careful anesthesia planning, calcium and thyroid checks, therapy and school supports protect health and daily life.
Chiropractic Spinal manipulation. We found no research on it for WS. About $55–$100 for a self-pay follow-up visit and $90–$200 for a first visit. Not a treatment for WS. Because people with WS can have narrowed arteries, lower bone density and joint differences, ask your cardiologist first and avoid neck manipulation.
Acupuncture Thin needles, sometimes with electrical stimulation. We found no research on acupuncture for WS. About $125–$230 for a first private visit and $90–$185 for follow-ups; community clinics about $50–$90. No proven benefit for WS. Fear and anxiety are common, so a child may find needles distressing; a licensed practitioner with a trusted adult present is safest.
Herbal medicine No herb or supplement has been shown to treat WS. The real supplement question is calcium and vitamin D, which belongs with your doctor and blood tests. Cost estimate being researched. Do not start or stop vitamin D, calcium or multivitamins on your own: both too much and too little have caused problems in WS. Tell your team about every product.
Massage therapy Gentle massage adapted to the person’s sound and touch sensitivities. We found no research on massage for WS. At one national chain, about $125–$160 for a 60-minute massage for non-members; memberships run about $70–$90 a month. May help some people relax, but it is not a treatment for WS. Choose light to moderate pressure and avoid vigorous deep-tissue work.
MBHA Wellness Coach Family-centered support: a health-check calendar, appointment and anesthesia preparation, anxiety and sound-sensitivity routines, healthy eating and activity, personal-safety practice, school and benefits navigation, caregiver wellbeing and connecting with other WS families. Cost estimate being researched. Parent Centers, early intervention and school services are free to families. Supports, but never replaces, your medical, therapy and school team.

Approach 1 of 6

Conventional medicine (AMA)

There is no cure for WS and no WS-specific treatment yet, so care means watching for problems and treating them early. The American Academy of Pediatrics publishes health-supervision recommendations for children with WS (updated in 2020), meant to guide the pediatrician and not to replace individualized care (Morris et al., 2020). The Williams Syndrome Association says the protocol details the routine testing for annual exams, and links guidelines for adults too (Williams Syndrome Association).

1. A care team that knows WS

  • Ask your pediatrician or primary care provider for a referral to a geneticist and a cardiologist experienced with WS. A specialty WS clinic can arrange evaluations by several specialists in a 1 to 2 day visit. The Williams Syndrome Association lists a multidisciplinary clinic at Stanford Medicine Children’s Health in Sunnyvale, California, and notes that clinic services vary, that you should call to find out what they offer, and that a physician referral may help with insurance coverage (Williams Syndrome Association).
  • Give each doctor the WS health-care guidelines and growth charts, which many physicians have never seen (Williams Syndrome Association), and ask them to use the WS ICD-10 diagnosis code, which also helps research (Williams Syndrome Association).

2. Medicines, by class (we never list doses)

  • Blood pressure medicines. Most high blood pressure in WS is treated with medicine, but there is no expert consensus on the best class. Because lowering pressure too far can reduce blood flow to organs, diuretics may not be an ideal first choice, and ACE inhibitors and angiotensin receptor blockers should be used with caution when a kidney-artery cause is suspected (Kozel et al.). A review of children and teens suggests some of these medicines may be considered even before overt hypertension, so specialists weigh this differently (Sivasubramanian and Meyers, 2021). Let the cardiology or kidney team decide.
  • Anxiety and ADHD medicines. The same classes used in the general population have been used in WS with varying relief. No prospective psychiatric medication trials have been done in WS, and authors suggest first- and second-line classes from clinical experience with safety checks at the start and periodically (Thom et al., 2021). Common ADHD medicine side effects overlap with WS problems, so anxiety, mood, heart function and blood pressure all need monitoring (Kozel et al.).
  • Thyroid, diabetes, puberty and growth. Underactive thyroid is treated with thyroid hormone replacement; diabetes with nutrition counseling, activity, and a medicine such as the common oral diabetes medicine metformin in many patients; very early puberty with hormone-blocking injections; and growth hormone may be considered in some children (Stanley et al.).

3. Early intervention (birth to age 3)

4. School, learning and the IEP

Under IDEA Part B, eligible children ages 3 to 21 have the right to a free appropriate public education in the least restrictive environment, planned in an Individualized Education Program (IEP) (ECTA Center). For a child 3 or older, call any local public elementary school and ask for a preschool special education evaluation (CDC). Ideas for the IEP meeting:

5. Anxiety and mental health care

Anxiety in WS has been hard to treat, and trials are needed. Cognitive behavioral therapy (CBT) looks promising (Kozel et al.). Adapted exposure therapy for children and CBT for adults have been piloted (Thom, 2024); one adult program used a caregiver as therapy partner, repetition, simpler language and a slower pace (Pineda et al., 2023). In an 8-week social skills program for 24 young adults, parents rated skills as improved, though the adults’ own ratings did not change (Fisher et al., 2022). If symptoms greatly affect daily life, ask about a psychiatrist who knows WS (Kozel et al.). Our Anxiety guide has general coping tools.

6. Costs and coverage

  • Medicaid’s EPSDT benefit covers medically necessary diagnosis and treatment for children under 21 who are enrolled in Medicaid, including hearing, vision and dental care (Medicaid.gov).
  • Adults: Medicare Part B helps pay for medically necessary outpatient physical therapy after the deductible, with no yearly limit (Medicare.gov).

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

We found no research on chiropractic care for WS. A PubMed search on October 28, 2026 for chiropractic, spinal manipulation or manual therapy together with Williams syndrome returned no records (PubMed search). Any benefit is unproven.

Safety points specific to WS

  • Neck manipulation and arteries. NCCIH says neck-focused manipulation has been linked to rare tears in neck arteries that can lead to stroke, and that serious side effects may be more likely in people with underlying conditions that raise the risk of injury (NCCIH). WS involves artery narrowing and connective tissue differences such as joint problems and soft, loose skin (MedlinePlus Genetics), so ask your cardiologist first and avoid neck manipulation.
  • Bone density. Bone mineral density is lower on average in people with WS, and it is unclear whether this raises fracture risk (Stanley et al.). Gentle techniques are the more careful choice.

What it costs

A typical self-pay follow-up visit runs about $55–$100 and a first visit about $90–$200 (The Pricer).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

We found no research on acupuncture for WS. A PubMed search on October 28, 2026 for acupuncture, acupressure or electroacupuncture together with Williams syndrome returned no records (PubMed search). Any help for pain, anxiety or sleep in WS is unproven.

Things to think about

  • Safety. Relatively few complications are reported, but nonsterile needles and improper treatment have caused infections, punctured organs and nervous system injury. Most states license acupuncturists (NCCIH).
  • Fears and sensitivities. Phobias and anxiety are common in WS (MedlinePlus Genetics), and many children develop worry about medical visits (Kozel et al.). Needles may add to that fear, and a quiet room matters for people with sound sensitivity. Let the person set the pace, and keep a trusted adult in the room.
  • Tell your cardiology team and the acupuncturist about WS and any heart medicines before you begin.

What it costs

Private sessions run about $125–$230 for a first visit and $90–$185 for follow-ups; community clinics with shared rooms charge about $50–$90 (The Pricer).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

No herb or supplement has been shown to treat WS. A PubMed search on October 28, 2026 for herbal medicine or supplements, including vitamin D, together with Williams syndrome returned 49 records. We looked through the first 25 titles, and none described an herbal remedy for WS; they concerned calcium, vitamin D and genes (PubMed search). We found little research.

The real supplement question: calcium and vitamin D

Here WS is different from most conditions, and the advice can sound contradictory:

  • Some babies have high calcium. Doctors have traditionally avoided multivitamins and vitamin D to prevent that. But this may contribute to a high rate of vitamin D deficiency in WS, and rickets has been reported in children kept on diets low in calcium and vitamin D (Stanley et al., 2021).
  • The American Academy of Pediatrics guidelines, as summarized in that review, suggest avoiding vitamin D supplements in infants with WS, but dietary calcium should not be restricted except under medical supervision. In the absence of high calcium, the review advises not restricting dietary calcium or vitamin D (Stanley et al.).
  • In a study of 22 people with WS, average age 29, 81% had vitamin D below 30 ng/mL (Shaikh et al., 2018).
  • At the other extreme, one infant with severe, symptomatic high calcium improved only after calcium and vitamin D intake were cut to the bare minimum (Lameris et al., 2014), and another had a calcium rebound weeks after treatment (Helfrich and Philla, 2015).

What this means for you: ask the doctor to check blood calcium and vitamin D levels and decide together whether any supplement or diet change fits your child or you. Do not give vitamin D, calcium or a multivitamin, and do not stop one, on your own. We don’t list doses.

Other products

NCCIH says dietary supplements may interact with medicines or pose risks for people with certain medical problems or going to have surgery, and many have not been tested in children (NCCIH). Tell the cardiologist, pharmacist and anesthesia team about every herb, vitamin and supplement, and bring the bottles to appointments.

Approach 5 of 6

Massage therapy

We found no research on massage for WS. A PubMed search on October 28, 2026 for massage or massage therapy together with Williams syndrome returned no records (PubMed search). Some people may simply enjoy it, but it is not a treatment for WS.

Follow the person’s lead

Safety

The risk of harm from massage appears low, though NCCIH reports rare serious problems, such as a blood clot, nerve injury or bone fracture, sometimes with vigorous deep-tissue massage (NCCIH). Since bone density tends to be lower in WS (Stanley et al.), ask for light to moderate pressure. Most states license or certify massage therapists (NCCIH).

What it costs

Prices vary by location. At one national chain, published price lists show about $125–$160 for a 60-minute massage for non-members, and memberships run about $70–$90 a month (The Pricer). Tips are extra.

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

Living with WS means many appointments, steady routines and a lot of planning. An MBHA Wellness Coach can help with the everyday side of life, working alongside, never instead of, your doctors, therapists and school.

A health-check calendar

The schedule is long (see “Health checks and monitoring” below). A coach can help you build a calendar for heart, blood pressure, calcium, thyroid, blood sugar, hearing and dental checks, since many doctors know little about WS (Williams Syndrome Association).

Preparing for procedures

Medical visits often cause anticipatory anxiety (Kozel et al.). A coach can help you rehearse what will happen and write the one-page summary for the anesthesia team.

Anxiety and sound sensitivity routines

  • Practice the coping steps from the therapist at home. The adapted CBT programs for WS rely on caregiver involvement and repetition (Pineda et al.).
  • Plan loud places with a quiet exit and a predictable routine.
  • Keep an anxiety log. In interviews with 100 caregivers and 79 people with WS, caregivers were more likely to report most anxiety signs, except physical signs, so both views help (Thom et al., 2026).

Healthy eating, activity and body

Personal safety

Friendliness toward everyone is a strength and a risk. Seventy-three percent of parents in one report described victimization of their child, and even adolescents and adults typically do not recognize stranger danger (Kozel et al.). A coach can help the family practice simple safety rules, trusted-adult lists and role-play.

Caring for the caregivers

Connecting with other families

The Williams Syndrome Association suggests contacting its local family support specialists and other parents (Williams Syndrome Association), and NIH GARD lists patient organizations for WS (NIH GARD). See “Growing up” below for planning adulthood.

Another approach

Heart, blood pressure & anesthesia

The heart and arteries

Heart and artery disease is present in most people with WS, most often narrowing of medium and large arteries (“elastin arteriopathy”) (Kozel et al.). Supravalvular aortic stenosis is present in up to 70% (Staudt and Eagle, 2021), though the severity varies a great deal: about 20% need an operation for it, while 30% to 40% have little or no narrowing there (Kozel et al.). A narrowed aorta is most often repaired with a surgical patch, narrowed lung arteries can be opened with a balloon procedure, and catheter treatment of other arteries is often unsuccessful (Kozel et al.). Checks by a cardiologist, with imaging, should continue for life (Kozel et al.). See our Heart guide.

Blood pressure

High blood pressure often starts in childhood and becomes more common with age. It should be measured in both arms and at least one leg, and consistently high or uneven readings may lead to imaging of the heart, aorta and kidney arteries (Kozel et al.). See our Blood Pressure guide.

Anesthesia and sedation

People with WS have a higher risk of complications with anesthesia (MedlinePlus Genetics). Sudden death occurs at about 1 in 1,000 patient-years, 25 to 100 times the general rate, and is often tied to sedation or anesthesia for heart surgery. Young people and those with the most severe heart narrowing seem to be at highest risk, though some with minimal narrowing have died (Kozel et al.). Because people with WS often need sedation or anesthesia for many procedures, anesthesiologists are urged to understand the condition (Staudt and Eagle). Sedation can also be used for dental work or imaging (MedlinePlus), so the same precautions apply there.

  • Careful pre-procedure heart screening is advised, with an anesthesia team that knows WS (Kozel et al.).
  • Care should be taken not to drop blood pressure suddenly at the start of anesthesia, to keep blood flowing to the heart muscle (Kozel et al.).
  • The Williams Syndrome Association recommends a comprehensive pre-anesthesia assessment and good hydration until 2 hours before the procedure, with IV fluids if the child cannot drink clear fluids for more than two hours. It also offers a “what to ask or tell the anesthesiologist” resource (Williams Syndrome Association).
  • A children’s hospital review (23 patients, 46 procedures) supports risk grouping and written protocols; one patient had a serious heart event about an hour after waking (Andrews et al., 2025), so the risk continues after the procedure.
  • Ask your cardiologist to review any planned procedure first, and carry a summary of your WS diagnosis and latest heart tests. See our Anesthesia guide. A 2019 review outlines a structured approach to the period around a procedure (Twite et al., 2019).

Another approach

Health checks & monitoring

Not everyone with WS has every problem. The checks below are the authors’ recommendations from a 2021 endocrine review and the Nature Reviews primer, so follow your pediatrician and WS clinic if they differ.

Calcium

Mild high calcium affects 15% to 30% of infants and young children, but significant (“actionable”) high calcium only about 5% to 10% of them, and less than 5% of older children and adults (Stanley et al.). Blood calcium is checked every 4 to 6 months in the first years (the review says both “until age 2” and “before age 3”), then every 1 to 2 years, with a urine calcium check when calcium is high and a kidney ultrasound if urine calcium is high or the problem persists. First-line treatment for significant high calcium is less calcium in the diet and plenty of fluids; hospital treatment can include IV fluids, diuretics and bisphosphonates (Stanley et al.). See “The real supplement question” in the herbal tab.

Thyroid, growth and puberty

Mildly underactive thyroid affects 15% to 30%, and overt hypothyroidism under 5%. Thyroid blood tests are done at diagnosis and every 6 to 12 months until age 3, then every 1 to 2 years. Height and weight are measured every 3 to 6 months in young children and at least yearly later, plotted on WS charts, and puberty is assessed yearly (Stanley et al.). See our Thyroid guide.

Blood sugar, weight and bones

About half of adults are overweight or obese, and 25% to 30% have a lipedema pattern of fat in the legs. Abnormal glucose tolerance is present in up to 75% of adults and diabetes in 9% to 36%. A fasting blood sugar is suggested yearly from adolescence, and a first bone density scan around age 30 (Stanley et al.). Adults in one study had higher blood sugar markers and lower bone density than matched controls (Shaikh et al.). See our Diabetes and Osteoporosis guides.

Hearing and sound sensitivity

A review found mild to moderate sensorineural hearing loss, mostly for high-pitched sounds, was common (Silva et al., 2018). Hearing loss can often be helped with hearing aids or other treatment (MedlinePlus), so ask whether hearing tests are due. See our Ear guide.

Stomach and bowels

Reflux, swallowing trouble, constipation, bloating, belly pain and diarrhea were all more common in people with WS than in controls, at similar rates in children and adults, apart from diverticular disease, which was not seen until adulthood (Boechler et al.). Constipation should be managed actively, and belly pain should prompt a check for diverticulitis (Williams Syndrome Association). See our Diverticulitis guide.

Kidneys, bladder and eyes

Urinary and vision problems are possible (MedlinePlus Genetics). Burning with urination, fever, back or side pain or cloudy urine can mean a urinary tract infection (MedlinePlus); about 32% of parents in the Brazilian survey reported one (Pires et al.). Crossed eyes (strabismus) are on GARD’s symptom list (NIH GARD). See our Kidney and Eyes guides.

Another approach

Growing up: school, family & adult life

Many things shape the life of a person with WS besides their health.

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Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

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