About this blog

I am a high school human anatomy and physiology teacher by trade and I double as a mother of a little girl with Williams Syndrome. When my daughter was diagnosed, I was thankful that I understood how the body worked so I could navigate through the condition and understand what the doctors had to say. This is my way of sharing my knowledge so other parents can have that same power.


Information contained in this site is strictly for education purpose to better understand the conditions associated with Williams Syndrome. You should in no way use this site for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.



Blog Contents

Brain
Chiari Malformation

Bones
Curved fingers and toes- Clinodactyly
Posture Issues associated with WS
Radial-ulnar synostosis

Cardiovascular
Main cardiovascular page
Mitral valve prolapse

Diet
Main growth and diet page
Absorbing calcium
Vitamin D

Education/ Cognitive Brain studies
Teaching Strategies for Educators 
Back to School Tips for Teachers
Main Speech page
Teaching Math to Children with WS
Navigating the School system- Kindergarten
Preparing your child for medical procedures
Williams syndrome behavior profile- ADHD
Visuo-spatial difficulties and how they cause motor delay

Genetics
Main genetics page
Understanding Elastin
Interpreting microarray results
Inheritance

Muscles
Main muscles and joints page

Sensory organs
Main ear page
Main eye page

9 comments:

  1. We just find out there is another family member with WS...my understanding is that it wasn't hereditary. Can someone with acknowledgement on that. could contact me at riosfamvbpr@gmail.com thanks

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    1. Enid, I have this explained on my main genetics page. I'll email you and give you more info. If you have more than one child in your family with WS, you may want to have the parents tested, too. It can be passed down from a person with WS to another with WS. http://understandingwilliamssyndrome.blogspot.com/p/genetics.html

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  2. I am currently a college student enrolled in a Medical Aspects of Disability class. One assignment for this class is to research the syndrome of your choice and my partner and I chose Williams Syndrome. Part of this assignment involves conducting an interview with an individual or family member of someone affected by the syndrome. I am wondering if you would be willing to participate in an email interview with me to not only help me complete this part of the assignment, but more importantly help me gain a greater understanding for WS. If you are willing to do this please email me at HeimsothKM14@uww.edu. Thanks!

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    1. I'd love to! I'll send you an email to set it up. Thanks for choosing WS!

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  3. my name is Victoria Volz i am currently doing a project on Williams Syndrome in my Psycho-linguistics class and i am in need a video that shows off a child's strengths in their vocabulary. Do you have any ideas where i can look.... i have searched youtube ..found a few.. want to show how their vocab is higher then should be considering IQ email is rabbbit315@aol.com thank u any info is greatly appreciated

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    1. I'm not sure I know of any sources like this. I will pass along any info if I see it during my research.

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  4. Hello,

    I too am doing a project on WS and am looking into the history of it. From what I understand it was thought to be due to hypercalcémie but but as more was learned, it was realised that it is more related to the missing ELN you describe. I am trying to understand two things.
    Is hypercalcémie still an important symptom or was that left at the wayside when the genetic causes were better understood?
    Did the syndrome exist unrecognized prior to the 1950s or is it new? Nothing I have read mentions anything pre 1950s.

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    1. Williams syndrome was coined by Williams, a cardiologist, in the 1960's. It was diagnosed clinically until the FISH test was developed by Morris et al. in the late 1980's. Here is a good article that the WSA uses that gives you some history of the disorder. Infantile hypercalcemia was a clinical symptom often used to diagnose clinically but FISH test that looks for the missing ELN gene is a better diagnostic tool because it's present in more children with WS (around 98%). Hypercalcemia is not as common. http://www.nytimes.com/2007/07/08/magazine/08sociability-t.html?pagewanted=2&ei=5070&em&en=2ea11fbb6792e903&ex=1184299200&_r=0

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    2. Thank you! That makes it much clearer.

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