An Interview with Jasmine Wylie of SADS Foundation for SCA Awareness Month
Hi Jasmine! Very happy to be speaking with you today. Can you tell me a little about your role at the SADS Foundation and your background in volunteering and helping patient communities?
I was diagnosed with Long QT Syndrome in 2009 after I survived cardiac arrest. After some recovery, I sought out a lot of info for myself, and did extensive research. One of the best resources I found was social media support groups; specifically Facebook. I got involved and made a lot of connections. Eventually, I wanted to help further develop those resources and make them even better. For years, have been an administrator of patient communities for those with Long QT Syndrome, sudden cardiac arrest (SCA) survivors, and those living with an implanted defibrillator (ICD). I’d long been a supporter of SADS, because our objectives were very closely aligned and they are a valuable resource for both families and med professionals. When the opportunity arose to work for them, I accepted! Having been in the trenches with SCA and living with Long QT Syndrome, the cause was very personal to me. From this vantage point, it’s easy to critique how support organizations might be filling additional gaps and to dwell on what could be done better, but SADS is very focused on the population they serve and regularly seek feedback from families and advocates. Instead of deciding the best course of action for the population they serve, they really listen at multiple levels, from individuals to committees. I’ve always been impressed with SADS, so am very excited to be joining!
October is SCA Awareness Month. How is SADS spreading the word about sudden cardiac arrest?
We are partnered with Parent Heart Watch and the Sudden Cardiac Arrest Foundation, along with other co-partners, for Call • Push • Shock, a national SCA awareness campaign. We’re co-branded with all those organizations for the event and are also sharing the resources they created, including videos, infographics, and more. As I’ve worked with SADS families and advocates, I’ve learned how much they appreciate online resources and information, because they can share these things on social media with the people they care about. Another project I am currently working on is a video of slides and pictures of survivors, in order to share SCA survivor stories. Everyone I have worked with so far has been very excited, and I understand their excitement at a personal level: when you’ve been affected, you often want to use your story for good. This project is very meaningful for them and their families, as well as myself. Of course, we don’t only spread awareness in October. This is a year round effort for SADS and other organizations.
You mentioned that you are a sudden cardiac arrest survivor. Could you tell me a little bit more about your personal SCA story?
Of course! I’ve been very public with my story, and have shared it elsewhere online, such as in this Bloom Magazine article and this Stanford Medicine X video. When I was 24, lying in bed at home at 8 in the morning, with no previous cardiac or other serious health issues beforehand, my husband heard me start gasping. Though at first he thought I might have been dreaming, he could tell something was very wrong. He called 911, and then gave me CPR. He was not trained, but his efforts are what saved me. It took more than CPR, but without his actions, I may not have had the chance to receive further intervention. This is why I often encourage people not to hesitate to do something in a crisis situation. Even if you have no training and doubt your ability, many times it is community members and family that save lives. Though they might not be comfortable with the idea of administering CPR, I am living proof of the efforts of an untrained bystander. And I hope that inspires people to take action and be prepared to do so, even if it is simply watching a video online (there are so many!), or learning hands-only CPR.
What do you feel are the most important messages for SCA Awareness Month?
First and foremost, of course, is that everyone should learn to recognize a SCA and to know the basics of how to respond. You could save a life, maybe someone in your community or maybe even someone in your own family. Also be aware of your personal and family history. Have you ever fainted suddenly or had an unexplained seizure, especially during exercise or following a startle? Are there any red flags there could be an inherited arrhythmia condition in your family, such as a history of unexpected, unexplained deaths in otherwise healthy young people? If there are, be sure to communicate this to your doctor. Many cases of SCA are preventable if the risk is known and mitigated with treatment.
One thing that is hard to talk about and sometimes is glossed over by the medical community and even support groups is that yes, survivors of SCA are lucky, and of course we should be (and are!) grateful to be here. But the expectation of gratitude put on survivors can be its own burden. Survivors also need to be able to talk about the hard parts (and there are many!) and work through their feelings, seeing a mental health provider if needed. Families and first responders, as well. Connecting with other survivors –in online communities, local support groups, the SCAA Cope Line, etc– is also very powerful and helpful. Because there was little support provided to me and my family in the way of counseling, I know firsthand how beneficial peer support can be. It’s a gap many survivors experience and we are are left to answer the question: how can I adapt and fully recover emotionally as well? It’s nice to see that situation is changing as improved after-care programs become more available. Peer support and organizations that support survivors and families can help fill in the gaps that still exist for many.
For readers who want to be involved in SCA Awareness Month, how can they participate?
Someone recently asked “what can I do to help,” and I told them to start sharing! The easiest way to raise awareness is through social media. Sometimes we have the idea that we have to do something amazing to have an impact, but we don’t have to. You can support a cause just by sharing materials or doing a fundraiser on social media. This is especially true for those who don’t have abundant time or energy, but who want to be part of a broader effort. SCAA, Parent Heart Watch, and SADS are all good places to start. SADS can provide physical materials that you can share with nurses, teachers, coaches, and other members of your community. Don’t hesitate to seek what’s out there; make contact where you can and ask around if you don’t see something you’re looking for. Fortunately, we don’t have to move mountains to make an impact. We can do a lot from where we are currently.
What else is the SADS Foundation excited about in the upcoming months?
We are busily preparing for the SADS International Conference, an opportunity for affected families and the medical community to gather for medical education. The family sessions of the conference is especially geared toward people who want to be more involved and to connect with others who have been affected by heart rhythm conditions that can cause SCA. It’s an opportunity to meet a lot of people with similar experiences, to learn more about SADS conditions, and to locate a lot of new resources. Everyone who wants to come should join us in Ann Arbor, Michigan this weekend! I’ll be doing our social media for the event, so even if you can’t attend, I’ll be Live Tweeting (follow the hashtag #SADSConf2018), and a few sections will be live streamed. I was involved with social media for the event over the past few years, and this year, I’m excited to make it even more robust, so we can reach even more people at home.
If you would like to learn more about The SADS Foundation, visit their website at https://www.sads.org/