Williams Syndrome

Here’s a free collection of resources about Williams Syndrome- Williams Syndrome blogs, videos, support groups, first-hand experiences and advice from people who have Williams Syndrome, etc.

Jump to:

Williams Syndrome Blogs

Here’s a list of Williams Syndrome blogs- blogs written by people with Williams Syndrome, or about Williams Syndrome.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Williams Syndrome Association	williams-syndrome.org/blog	2017
Williams Syndrome Smile	williamssyndromesmile.com	2017
Musings By Mama	musingsbymama.com	2017
Raising A Child With WS	chromo7ws.blogspot.com	2016
Understanding Williams Syndrome	understandingwilliamssyndrome.blogspot.com	2016
A Peeko At Niko	williamssyndrome.blogspot.com	2012
The Busy Nothings	thebusynothings.com/williams-syndrome	2008

Williams Syndrome Support Groups

Williams Syndrome Support Groups On Facebook

Other Williams Syndrome Support Groups And Forums

Daily Strength Williams Syndrome Support Group (7 members, 67 posts)

Williams Syndrome Survey

We’re surveying people about their experiences with Williams Syndrome. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Williams Syndrome**

Williams Syndrome Differences

What makes you unique from people without Williams Syndrome?

I love everyone. (Genesis, 17 years old)
Our ability to love just about anything and everyone, and our obsessions that some normally don’t think about. (Megan, 23 years old)
Meredith is the most thoughtful and naturally loving person. She is very spiritual, and has a unique gift of understanding what other people are feeling. (Dale, mom of 27 year old daughter)
I am blessed to have a sister with Williams Syndrome. I am so much stronger and wiser. (Pamella, 31 years old)
I’m very outgoing. (Katie T., 33 years old)
My daughter has it. She’s so loving and very in tune with others emotional needs. She has a sense when someone is unhappy and needs love. (Selena, 36 years old, daughter has WS)
Her ability to trust people (with no regard to safety). (Jenny, 37 years old)
My sister has Williams Syndrome. What makes her unique is that she is incredibly trusting and empathetic, more so than anyone I’ve ever known. (Maggie, 40 years old)
I love everyone, and I love music. (Christian R., 46 years old)
The need to be assisted in life. (Sandy, 52 years old)
They’re happy all the time. (Margaret W., 55 years old)
My grandson’s smile and beautiful eyes. (Andrea G., grandson has WS)
I love everybody. (Luca, 6 years old)
My special relationships with dogs. (Sela, 12 years old)
I can hear things louder than other people. (Lydia, 13 years old)
I’m special to my William Syndrome friends. (Brett, 21 years old)
We can talk to any one that we meet. (Nicole, 22 years old)
My facial features and my personality. (Shannon, 24 years old)
My laughing. (Erik, 33 years old)
We have weak muscle tone and very sensitive hearing. (Emily, 34 years old)
I am special. (Seth, 39 years old)
I tend to smile and laugh a lot. (Amy, 44 years old)

Williams Syndrome Facts

What interesting facts have you learned about Williams Syndrome?

I had never heard of WS until Dakota, who is my grand daughter, was born. We got the diagnosis when she was 3 years old, but my daughter and I had researched so much, that we were pretty sure already, so we weren’t surprised. (Dakota, 10 years old)
The love of music. (Genesis, 17 years old
My starburst patterns in my eyes. (Megan, 23 years old)
As a mother, medically I have learned about heart conditions, taking extra care with teeth, checking on hygiene, and learning to always consider another person. Merredith will bathe twice a day, but forget to wipe her mouth after eating ??? She is able to learn anything, but we go over it a few times. She is able to hold wonderful conversations with intelligence, and she remembers facts. She has a great general knowledge. When it comes to mathematics and money, it takes way, way longer. She is very generous, and will easily give things away if she thinks someone else needs it more. She will pay for someones food as a gift to the stranger. (Dale, mom of 27 year old daughter)
Selflessness. Through all of my sister’s pain and suffering, she is still more empathetic than I have found others to be. (Pamella, 31 years old)
That we like music. (Katie T., 33 years old)
People with Williams Syndrome are very talented- they love to play music, they are very energetic, they’re very friendly, and willing to help anybody out. (Mara R., 35 years old)
They suffer from insomnia. (Selena, 36 years old, daughter has WS)
Their love for music, love to talk and “socialize”. (Jenny, 37 years old)
Despite cognitive impairments and other physical/psychological issues, individuals with Williams often have enhanced musical abilities as well as above average language and interpersonal skills. (Maggie, 40 years old)
We are different. We are unique. Sometimes our doctors have to think out of the box with us. We love family. (Christian R., 46 years old)
The deletion of elastin. (Sandy, 52 years old)
They have the biggest hearts. (Margaret W., 55 years old)
I look a little different than people without WS. I was born this way. (Sela, 12 years old)
We all have health issues. We have to go to camp every year. (lol she is talking about music camp). (Lydia, 13 years old)
It happens to 1 in 10,000 kids. (Brett, 21 years old)
Lots of heart problems. (Nicole, 22 years old)
The most interesting fact I think is that you’re missing chromosome 7. (Shannon, 24 years old)
We love music and we want everyone to be our friend. (Emily, 34 years old)
I love others. (Seth, 39 years old)
We are friendly, and we love to have fun. (Amy, 44 years old)

Williams Syndrome Difficulties

What are hard aspects of living with Williams Syndrome?

Dakota’s hypersensitive hearing makes it hard for her to be in crowds and loud noises frighten her. Also, her syndrome is most obvious is social settings, especially when people don’t know her. They make assumptions that she’s a brat, or annoying, etc. We think she’s perfect, of course. She’s also very sensitive to music and certain songs make her cry, for example, she loves “Silent Night” but will be crying halfway through it. (Yet she still asks us to play it sometimes). “Twinkle, twinkle little star” always makes her cry! We don’t play or sing it when she’s around. LeeAnne Rimes’ “Amazing Grace” is another one. (Dakota, 10 years old)
Not a lot of close friends. (Genesis, 17 years old)
Being misunderstood, and looked down on all the time. (Megan, 23 years old)
I think just my constant worry of her safety. She trusts everyone. Also she is my 24/7. Where I am, Merredith is. (Dale, mom of 27 year old daughter)
Heart conditions, advocating, explaining the condition to doctors and nurses, and ignorant and non-compassionate people. (Pamella, 31 years old)
Not being able to drive. (Katie T., 33 years old)
When a baby is born with Williams Syndrome, they can have heart problems, they can have eating issues, they can have sensitive hearing, and learning disabilities also. (Mara R., 35 years old)
Their physical development is slower then most children’s. (Selena, 36 years old, daughter has WS)
The cardiovascular issues (aorta valve, etc.). (Jenny, 37 years old)
For my sister, I think the psychological toll has been the worst. (Maggie, 40 years old)
Not driving. Having health problems. (Christian R., 46 years old)
That I can’t do things by myself, and that I have few friends. (Sandy, 52 years old)
Health. (Margaret W., 55 years old)
All of it. (Tricia L., Daughter has WS)
Learning about their mood swings. (Andrea G., grandson has WS)
Heart disease. (Luca, 6 years old)
People making fun of my special needs. (Sela, 12 years old)
It’s hard because I have stomach aches all the time. Also, some people don’t notice WS people. (She feels left out). (Lydia, 13 years old)
Meeting new people and friends. (Brett, 21 years old)
Sensitivity to loud noises and not eating many foods. (Nicole, 22 years old)
When people don’t understand me. (Sophie, 22 years old)
Nothing that I can think of. (Shannon, 24 years old)
It’s hard for me to make friends. (Erik, 33 years old)
For me it’s living with my anxiety, ADD, and depression. (Emily, 34 years old)
Dealing with relationships. (Amy, 44 years old)

Williams Syndrome Advice

What words of encouragement/advice can you share with others who have Williams Syndrome?

Patience, love, understanding, compassion are essential! (Dakota, 10 years old)
Always smile. (Genesis, 17 years old)
Your beautiful the way you are. Be yourself, and know only you know who you really are. (Megan, 23 years old)
We are blessed to have these special people in our lives. Treat them normally, because they can achieve. Merredith is at Bible school at the moment, and doing so well. She went to school and even though was on her own program, she always tried her best. (Dale, mom of 27 year old daughter)
Be yourself always. (Pamella, 31 years old)
Never let people put you down. (Katie T., 33 years old)
You need to be brave, strong, and willing to stand up for yourself in situations that you may not be comfortable with, especially when talking to people you may not know. So I suggest to be cautious and careful. (Mara R., 35 years old)
The love and light a Williams child brings into your life and home is amazing. (Selena, 36 years old, daughter has WS)
That we’re specially made by God, same as everyone else. (Jenny, 37 years old)
Embrace the parts of yourself that make you unique and find the people who lift you up and help you the most. Avoid those who have betrayed your trust. (Maggie, 40 years old)
Stay strong. You can do anything you put your mind to. (Christian R., 46 years old)
Find a community of similar people to help along the way. (Sandy, 52 years old)
They give you a reason to live every moment with them. (Margaret W., 55 years old)
Love them with all your heart. (Andrea G., grandson has WS)
It will be easier. (Luca, 6 years old)
Just be yourself and don’t let what others say bother you. (Sela, 12 years old)
Do your best no matter what and be happy with it. (Lydia, 13 years old)
It’s an amazing feeling (Brett, 21 years old)
Be positive. (Nicole, 22 years old)
You are not alone. (Sophie, 22 years old)
Everything will be okay in the end. (Shannon, 24 years old)
Do let anyone get you down. (Erik, 33 years old)
Never dis your abilities! You can do amazing things! (Emily, 34 years old)
They are loved. (Seth, 39 years old)
Be who you are. Be the best you. (Amy, 44 years old)

Williams Syndrome Diet and Exercise

What’s been your experience with diet and exercise?

Dakota isn’t on a special diet. However, she doesn’t eat some foods and the best we can figure out is that it’s because of the texture. She doesn’t eat chocolate and she’s kind of picky about crackers, and things of that nature. (Dakota, 10 years old)
I don’t like exercise. (Genesis, 17 years old)
Exercise one and a half hours a day and no particular diet. (Megan, 23 years old)
Merredith does not like to exercise, and she eats very little. She used to ride her bicycle when she was little. As a baby she did not enjoy eating unless it was full of sugar. (Dale, mom of 27 year old daughter)
Diet is challenging. My sister will now drink Ensure and formulas, which is a step up from the g-tube, (Pamella, 31 years old)
No diet, but I like walking. (Katie T., 33 years old)
I am a vegetarian, so sometimes it is hard to go to a restaurant that does not provide vegetarian food, so I get a little too picky with the food choices I make. I go to the YMCA, and get exercise. (Mara R., 35 years old)
Trampolines are amazing! Works out the whole body, builds stamina and our baby loves it! As for diet, small pieces is best. (Selena, 36 years old, daughter has WS)
Jenny was in great shape, and lowered the amount of food she was accustomed too. (Jenny, 37 years old)
My sister has struggled with both. The most effective exercise has been with a personal trainer. (Maggie, 40 years old)
It’s hard. I love beef and potatoes, and can’t eat them. (Christian R., 46 years old)
The older you get, the less exercise and the more weight gain. (Sandy, 52 years old)
My grandson can’t eat solid food, just baby food, but he can out run you. (Margaret W., 55 years old)
I watch my daughter’s diet- she is lazy and won’t exercise. (Tricia L., Daughter has WS)
He loves chicken, and is on the move all the time. (Andrea G., grandson has WS)
I crave sweets and have to have limits. I tire easily while exercising but like kicking a soccer ball. (Sela, 12 years old)
I love to exercise. I jump on the trampoline, use the stair master, swim, run, cheer, bowl. It is also very important to try new foods, so you know if they are good or not. (Lydia, 13 years old)
I walk. (Brett, 21 years old)
Very hard. I go to the gym 3 times a week. (Nicole, 22 years old)
Not the best but not the worst. (Shannon, 24 years old)
(Erik, 33 years old)
I do a ton of walking every day. (Emily, 34 years old)
Not much. (Amy, 44 years old)

Williams Syndrome Treatments

What’s been your experience with treatments (medication, therapy, etc.)?

When she was younger, Dakota was terrified of doctors. I’m sure that was because she was seeing either her General Practitioner or the Cardiologist so much. (Dakota, 10 years old)
Back surgery was really really bad. (Genesis, 17 years old)
Therapy for a while, no medication at the moment, sees doctor regularly, is mostly healthy. (Megan, 23 years old)
In South Africa that has always been a problem, because not many doctors know about it. We see the heart specialist, and then our own doctor does tests. She goes to the dentist once every six months. She has just had a jaw replacement operation and now needs braces. All her treatment happens separately without the doctors being a ‘team’. (Dale, mom of 27 year old daughter)
Horse therapy was effective for creating texture tolerance, patience and good posture. (Pamella, 31 years old)
None, only loud noises bother me. (Katie T., 33 years old)
My only experience with medication is that I have a low potassium problem, so when that happens I get very weak in the legs and my arms, so that’s the only experience that I’ve had with that kind of health problem. (Mara R., 35 years old)
We do melatonin replacement therapy for sleeping at night. And physical therapy to build strength and coordination. (Selena, 36 years old, daughter has WS)
I know Jenny needed what was prescribed to her, but one side effect I think was forgetfulness. (Jenny, 37 years old)
My sister has been on a ton of different medications. She is extremely sensitive to medications and often gets side effects from even a tiny dose. Therapy has been quite helpful. (Maggie, 40 years old)
It’s hard sometimes. I would like my normal life back, but it’s okay, I’m strong. Sometimes people don’t understand me. (Christian R., 46 years old)
They’re only necessary when young…to try to make the WS the best they can be. (Sandy, 52 years old)
He will not take medication we put it in his bottle. (Margaret W., 55 years old)
It’s continuous, never ends. (Tricia L., 56 years old)
He has a lot of help in Ohio. (Andrea G., grandson has WS)
They are. Very helpful in education and growth. (Luca, 6 years old)
I do lots of therapy and love it all. I take lots of medication and it helps me. (Sela, 12 years old)
I don’t do that. (Lydia, 13 years old)
Lots of blood work for thyroid and calcium. (Nicole, 22 years old)
It works. (Erik, 33 years old)
I’ve been on medication. I did speech therapy and physical therapy when I was younger. (Emily, 34 years old)
Very good. (Amy, 44 years old)

Williams Syndrome Recommendations

Anything you’d recommend for someone with Williams Syndrome?

Always smile. (Genesis, 17 years old)
Therapy and essential oils. Going all natural has helped me a lot. (Megan, 23 years old)
Just always be there for your child. Merredith likes to know how each day will go, and she likes to be part of every plan. (Dale, Mom of 27 year old daughter)
Music!!! And a variety of sounds…My sister loves waterfalls. (Pamella, 31 years old)
Be kind. (Katie T., 33 years old)
I believe UCLA here in California has lots of resources, and they are very helpful with Williams, and I went there a couple times several years ago to do some testing. They were very nice and friendly. (Mara R., 35 years old)
Find other families who can support you. Either in Facebook or in local groups. It helps. (Selena, 36 years old, daughter has WS)
Don’t be too trusting. There are a lot of people that could care less how they treat you in this world!! (Jenny, 37 years old)
To form a large support system of family and friends who can help you. (Maggie, 40 years old)
Be kind, stay strong, and remember you are unique, and can do anything you put your mind too. (Christian R., 46 years old)
Get all the services you can.. You will need financial help and physical help all your life. (Sandy, 52 years old)
Patience, a big heart and a lot of love. (Margaret W., 55 years old)
Be patient, seek any help you can get! (Andrea G., grandson has WS)
Music therapy! (Luca, 6 years old)
Always try your best and you will learn how to do things. (Sela, 12 years old)
Go to music camp. (Lydia, 13 years old)
Make life a special place. (Brett, 21 years old)
Online support groups. (Nicole, 22 years old)
Facebook support groups. (Sophie, 22 years old)
If you need someone to talk to please talk to somebody. (Shannon, 24 years old)
Be yourself. (Erik, 33 years old)
Horseback riding, going on trips, and other things like that. (Amy, 44 years old)

Williams Syndrome Resources

What specific resources have you found most helpful?

WSA website and advice from WSA staff. (Megan, 23 years old)
The internet. (Dale, mom of 27 year old daughter)
Trial and error and verbal praise for efforts. (Pamella, 31 years old)
I have none. (Katie T., 33 years old)
The helpful resources that I could find was on the website. They have all the information for anybody newly diagnosed with Williams syndrome. (Mara R., 35 years old)
Facebook groups. (Selena, 36 years old, daughter has WS)
Williams Syndrome Association has been a big help. I have some old WSA literature/magazines that were informative. (Jenny, 37 years old)
WSA, doctors in Boston who specialize in WS. (Maggie, 40 years old)
The Williams Syndrome Foundation site. (Christian R., 46 years old)
School, PT, OT, state and federal… Community support. (Sandy, 52 years old)
Books and other people with William syndrome children. (Margaret W., 55 years old)
WSA and Facebook groups (mom’s answer). (Sela, 12 years old)
(Brett, 21 years old)
Wikipedia and online support groups. (Nicole, 22 years old)
Williams Syndrome Association. (Shannon, 24 years old)
My mom. (Erik, 33 years old)
Williams syndrome.com (Emily, 34 years old)
(Seth, 39 years old)
My Job coach at work. (Amy, 44 years old)

Williams Syndrome Stories

Share an experience you’ve had related to living with Williams Syndrome.

It’s hard to live on my own and I get scared about my future if I can have a life on my own some day. (Megan, 23 years old)
I am a very blessed mother who is told how much I am loved every day by Merredith. Merredith is a very honest person, so I always let her know the full truth. When she knows, she understands. Sounds and new experiences can make her a bit nervous. (Dale, Mom of 27 year old daughter)
Slow motor skills. (Katie T., 33 years old)
I was three years old when my parents found out I had Williams syndrome. It’s been a very interesting experience dealing with eating vegetarian food, and dealing with my low potassium problem and my sensitive hearing. (Mara R., 35 years old)
I took my baby to the store. There was a man in line. He looked happy. But he must have had something internal going on. My daughter wanted to just hug him and love on him. He looked at me and said thank you. I needed that today. Her gift to know what others feel amazes me sometimes. (Selena, 36 years old, daughter has WS)
Jenny was my husband’s niece. She lived with us for 18 months, before she passed away March of last year. She taught me what love and forgiveness was from her perspective. (Jenny, 37 years old)
I have fond memories of going to the WS National Conferences as we were growing up. (Maggie, 40 years old)
When I first got sick with my kidney disease, I was upset. Sometimes the doctors would not talk to me, but to my mom. I got mad. I told them they need to talk to me too. They understood. They also know with my condition I am not like other people with my condition, and they always need to look at that. Williams syndrome is different, and we have to teach people about it. (Christian R., 46 years old)
Trying to learn how to print, but school forced cursive. Awful handwriting now. (Sandy, 52 years old)
Soft hearted. (Margaret W., 55 years old)
The feeding tube was the hardest when he was little. When he had his open heart surgery. He is great now- love him to death! (Andrea G., grandson has WS)
I have anxiety and have to remember to take deep breaths. (Sela, 12 years old)
I have a lot of friends with syndrome. I have some plain friends too. (when she says syndrome she means WS, Downs, Autism…etc, plain people are people without a syndrome). (Lydia, 13 years old)
All the doctor’s appointments I love going to. (Shannon, 24 years old)
Meeting famous people. (Erik, 33 years old)
When I was younger I was bullied a lot but now that has passed. (Emily, 34 years old)
I’ve had the pleasure of meeting new people and going on cruises with the Dream Team and Gang. (Amy, 44 years old)