From Ripples to Tidal Waves: Communities and the Turner Syndrome Movement

I often joke that I only feel patriotic every couple of years. The overwhelming pride and joy I suddenly feel for our country just happens to coincide with the Olympic games, a time during which I feel I can properly reflect on our country’s greatest achievements. During this time of much political confusion and social turmoil, I am grateful for the arrival of the Olympics, serving as a reminder of all we have accomplished and the people that make the United States so strong and diverse. While Americans tend to pride ourselves in our focus on independence and individualism, every couple of years, I feel like we are one nation again. I feel connected to our athletes through my television screen, and I smile as they embrace one another and teams from other nations. Even in individual events, no athlete is ever alone. They have their team by their side and the country attentively watching. Despite our views on the importance of the individual and individual freedom, the Olympics make it especially clear that we can never separate ourselves from those around us, no matter how hard we may try. Even if we could sever ourselves from our families and friends, we surely wouldn’t want to. Our various communities support and shape us as we simultaneously support and shape them. This is probably the most important lesson I’ve learned during my time with the Foundation and after speaking with girls and women who have Turner Syndrome.

Turner Syndrome is significant, there’s no doubt about it. While the age of diagnosis and associated symptoms vary from woman to woman, the discovery of a Turner Syndrome diagnosis cannot go unnoticed. Although many girls and women confidently assert that Turner Syndrome doesn’t affect their daily lives, they understand that they must be aware of their condition so that they can properly monitor their health throughout their years. This is not a simple task, especially immediately following a diagnosis. Our healthcare system is convoluted, inefficient, and expensive, requiring adequate resources and support, especially for those facing lifelong conditions like Turner Syndrome. It’s no wonder then that girls and women with Turner Syndrome rely heavily on their communities for support and resources as they come to accept their diagnoses and learn to live happy, healthy lives while properly caring for their bodies. These communities take many forms, from family members and friends to after school groups and religious communities. Not only do these communities allow for girls and women to openly share their diagnoses if they choose to do so, but they also serve as reminders that those affected with Turner Syndrome are no different than anybody else. They will always have people by their side, and they have the opportunity to give back to these communities if they choose to do so. As it turns out, this is a fairly common practice.

Girls and women with Turner Syndrome frequently cite community support, in whatever form it takes, as an important part of understanding and living with their diagnoses. This support can be life-changing, so it’s not surprising that many of these girls go on to give back to their community, and many of these women often already do. There are nearly endless career possibilities in the modern world; however, girls and women with Turner Syndrome are frequently and notably interested in pursuing careers in healthcare, social work, and education. These are the kinds of services that they themselves can greatly benefit from as they learn to accept their condition, and they dedicate their lives to ensuring others can have the same services, whether or not they are impacted by Turner Syndrome. These women are incredibly selfless as they work to better the lives of others as they face their own challenges. Clearly, girls and women with Turner Syndrome are a special gift for communities, and their stories of accomplishment and perseverance are truly inspiring. Just like Turner Syndrome itself, these women are not as rare as we may be led to believe; in fact, chances are someone who makes a significant impact in your own community has Turner Syndrome.

Although women with Turner Syndrome are often highly active in their communities, these communities cannot replace the unique and powerful experience of forming lasting relationships with other girls and women with Turner Syndrome. Despite the importance of these relationships, forming and maintaining them is not always easy. Girls and women with Turner Syndrome may live far from others with the condition, especially when they are not located in bustling cities or nearby suburbs. Despite this obstacle, even meeting one other person with Turner Syndrome can be a life-changing event, and the memories from said encounter can empower girls and women for years to come. With this promise in mind, girls and women with Turner Syndrome often search far and wide to connect with someone else who can understand their condition. The internet and social media have greatly assisted in this endeavor; however, these technologies cannot compete with the original social network: face to face interaction. Across the country, the Turner Syndrome Foundation helps passionate and dedicated community members hold events that allow for these interactions to take place, from fundraisers and awareness events to monthly meetings and summer camps. Special and lasting relationships naturally form from these events and gatherings, allowing girls and women with Turner Syndrome to feel connected by shared experience, no matter the distance that separates them in their daily lives. Friendships are formed, and connections between generations help increase education about the history of Turner Syndrome while simultaneously providing the young and the old with hope for the future. Within these communities, Turner Syndrome is embraced as a blessing.

Clearly, communities play an active role in supporting and shaping girls and women with Turner Syndrome while the same girls and women support and shape their communities in return. This activism is perhaps the most powerful tool we have in the continued fight to increase awareness of and activism for girls and women with the condition. During one of my last conversations with Laura Fasciano, the director and founding president of the Foundation, she reminded me that all movements start with the people. Movements begin with tiny ripples being made by individuals; however, since we are all connected through family, friends, and community, these ripples do not die out. They continue to propagate, impacting and inspiring more and more people until the ripples have formed a tidal wave. This is a slow process, but the first ripple can be made if we take a moment to draw attention to uncomfortable truths about the world we live in, our country, and even ourselves. These truths are what catch the attention of people far and wide, starting as awareness efforts but quickly growing into activist and advocacy endeavors, eventually leading to noticeable changes in our society and laws. The only way a movement can move is when we set an uncomfortable truth in motion. When we get people talking, we get people doing, and with doing comes change.

As I end my time with the Foundation, I am sad to go, but I know that this is only the beginning for Turner Syndrome awareness and activism. I have been touched by the message of the Foundation and the many girls and women I have spoken with, and hope one day, if they haven’t already, they’ll touch you, too.

Weekly Challenge: Take it upon yourself to build and maintain a community of support for girls and women with Turner Syndrome by hosting a Turner Syndrome Foundation event in your community. Check out the Foundation’s website for support and inspiration.