This week, the WSA learned of the loss of another child with Williams syndrome. Our heartfelt sympathy goes out to the family and everyone who knew him. I know that these losses can create increased anxiety and fear, alongside a desire to do something to try to prevent this from happening in the future. I share that desire - and so does our dedicated team of professionals we partner with. I have had discussions on this topic during our clinical consortium and CReWS monthly meeting this week, individually with Drs. Barbara Pober and Mark Levin, with the leadership team at the Armellino Center of Excellence for Williams Syndrome, and with the WSA Board of Trustees. Work has begun to create a formal, secure, yet compassionate process to gather the vital information related to the death of someone with Williams syndrome, to share the information with our medical experts, and to use this information to further study these occurrences of not only sudden cardiac-related deaths, but all causes of death in Williams syndrome.
As we work to develop this process, there are a few steps all families of someone with WS can take now:
- Join CReWS. CReWS (the Collaborative Registry for Williams Syndrome) has been developed for, and is owned by the Williams Syndrome Association. The Registry collects data about the lives of people diagnosed with Williams syndrome (WS) in order to advance our understanding of the condition and its underlying causes, and develop better treatments for persons with Williams syndrome. CReWS collects and organizes information & medical records on people with Williams syndrome and connects families to doctors and scientists currently researching the condition.
- Know and share your resources. A new page on the WSA’s website that compiles a number of resources on sudden death and cardiac issues in WS. Make yourself familiar with this information, and share it with primary care doctors and cardiologists.
- Talk! Find a trusted family member, friend, or therapist to talk through any increased anxiety you may be feeling when learning news like this. Also, talk with your spouse/partner/other caregivers about your willingness to share information with our medical experts, or to request an autopsy if your loved one with WS were to pass. Those discussions, though extremely difficult and often very emotional, can be a bit easier to have before a loss occurs.
If you have questions, please don’t hesitate to contact me, or any of our team at the WSA. Take care of yourselves, and as I was reminded earlier this week by one of the parents who is currently navigating one of these impossible losses, “hold your children close and appreciate the moments we do have, no matter the situation.”
-Sarah