I didn't know what Williams Syndrome until about three years ago. When my little cousin Lauryn was born, we knew she had some health issues but it wasn't until she was five years old that there was an official diagnosis explaining these problems. We were told that she had Williams Syndrome and a few months later, that she would need to have open heart surgery due to cardiovascular problems prominent with WS in children. Lauryn's parents showed strength as their little girl faced a surgery mostly adults never have to face; and their extended family, myself included, were educated on this rare condition as we supported and poured our love into Lauryn.
At the end of May, Lauryn turns eight years old. Coincidently, May also is Williams Syndrome awareness month. In honor of both Lo's birthday and awareness month, here are a eight key facts about WS.
1. Williams Syndrome is a genetic condition.
It is caused by a deletion in genetic material in chromosome 7 of about 26-28 genes.
2. Some of the most common health problems in WS include cardiovascular disease, developmental delays, and learning disabilities.
Because of a missing elastin gene, Lauryn's aortic artery was narrowed, resulting in the need for open heart surgery. She remained optimistic though, as shown by her thumbs up.
3. WS can be identified by a few facial characteristics.
This includes small upturned noses, wide mouths, full lips, and small chins. Uniquely, some people with Williams Syndrome with blue or green eyes can also have a "starburst" on their iris.
4. Those diagnosed with Williams Syndrome usually have "excessively social" personalities.
Typically, they are unafraid of strangers and seek out conversation with adults rather than their peers. Anyone who knows Lo can see this aspect of WS in full scale. She is the friendliest little girl--so much so that her mom has had more than a few "stranger danger" discussions with her.
5. WS was previously known as "Elfin Face Syndrome" due to its facial characteristics.
This, however, is no longer the preferred term. Interestingly, though, it is thought that those with WS could have been the origin of many elf or fairie mythology--due to their friendly nature. More accepted, WS is also commonly called Williams-Beuren Syndrome in Europe.
6. It affects about 1 in every 10,000 people worldwide.
It is equally distributed between male and females.
7. Williams Syndrome is usually randomly caused.
Among those without WS, in forming their child's DNA there are deletions in chromosome 7, as mentioned before. This is a random event in the reproductive cycle. However, if those with WS choose to be parents, there is a chance their child will inherit it.
8. Individuals with WS have a higher chance of developing anxiety and depression.
Anxiety is common, partially due to the hypersensitivities those diagnosed with Williams Syndrome face (such as hyperacusis, or sensitive hearing). Depression in individuals with WS can be spurred by isolation caused by a difficulty in forming lasting relationships. Though those with WS tend to be highly sociable, it is often difficult to process social cues necessary for these types of relationships.
If you are interested in learning more about WS, visit the Williams Syndrome Association webpage. Lauryn also has a Facebook page promoting Williams Syndrome awareness and documenting her journey with WS. It's called Loving Lolo.
