May 17, 2017

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

  1. Williams Syndrome Parents & Family United (2,510 members)
  2. Williams Syndrome Global Support Group (2,493 members)
  3. Williams’ Syndrome Facebook Group (2,445 members)
  4. Wee Ones With Williams Syndrome Born 2011-2016 Group (669 members)
  5. The Williams Syndrome And Special Needs Group (642 members)
  6. Williams Syndrome Gulf Coast Group (450 members)
  7. Williams Syndrome Awareness Group (387 members)
  8. Williams Syndrome Awareness Facebook Group (327 members)
  9. Love For William’s Syndrome Facebook Group (263 members)

Other Williams Syndrome Support Groups And Forums

  1. 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?

  • Our ability to love just about anything and everyone, and our obsessions that some normally don’t think about. (Megan, 23 years old)
  • Merredith 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)
  • Her ability to trust people (with no regard to safety). (Jenny, 37 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)

Williams Syndrome Facts

What interesting facts have you learned about Williams Syndrome?

  • 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)
  • Their love for music, love to talk and “socialize”. (Jenny, 37 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)

Williams Syndrome Difficulties

What are hard aspects of living with Williams Syndrome?

  • 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)
  • The cardiovascular issues (aorta valve, etc.). (Jenny, 37 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)

Williams Syndrome Advice

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

  • 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 programme, 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)
  • That we’re specially made by God, same as everyone else. (Jenny, 37 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)

Williams Syndrome Diet and Exercise

What’s been your experience with diet and exercise?

  • 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)
  • Jenny was in great shape, and lowered the amount of food she was accustomed too. (Jenny, 37 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)

Williams Syndrome Treatments

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

  • 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)
  • I know Jenny needed what was prescribed to her, but one side effect I think was forgetfulness. (Jenny, 37 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)

Williams Syndrome Recommendations

Anything you’d recommend for someone with Williams Syndrome?

  • 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)
  • 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)
  • 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)

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)
  • Williams Syndrome Association has been a big help. I have some old WSA literature/magazines that were informative. (Jenny, 37 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)

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)
  • 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)
  • 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)