Turner syndrome (TS) is a rare condition, and so it is easy for people with it to have the impression that they are alone. It can be difficult to find other people who share the same experiences and challenges as you. This is why it is so important to have the opportunity to meet other people with TS. These types of events allow girls and women with TS to have the chance to discuss their experiences with each other and to learn about sides of TS that they may not have been exposed to. These types of events can also allow for a greater sense of community, for a greater understanding of how the TS community feels about different things, and for a greater understanding of what the TS community needs.
A Free Event to Meet Others Like You!
TSF is hosting the X Factor Summer Bash for people with Turner syndrome so that they can have the chance to meet others like them! The Bash is taking place at Liberty Lake, a summer camp located in Bordentown, New Jersey. It is a one day event, taking place on Saturday, July 29th from 10 am to 5 pm. Group discussions (based on age) will be held beginning just after 10 am (so make sure to be there by 10!) We will have a covered pavilion with seating just for us. Rain or shine, the event will go on!!
Food and drinks are provided starting at noon and, yes, there are gluten-free options available. Coolers and adult beverages are permitted (no glass bottles, please). During the afternoon, feel free to have fun with your TS friends! There are many summer activities to do, including swimming (there are 2 pools), boating, and mini-golf, so make sure to bring a swimsuit and a towel!
The Summer Bash is free for everyone who has TS and is available at a reduced charge for immediate family members. This is a great opportunity to meet others with TS and to speak about issues that only people with TS can relate to, so please come!
The Importance of Meeting Others Like You
Since TS is a rare condition, many women with it may feel different from others or isolated in their challenges. Meeting others with the same condition allows people to know that they are not alone, and that there are many who are facing the same challenges that they are. There are many elements of TS that are difficult for people to understand when they do not have the condition, and the ability to speak with others who do understand can allow people to feel heard and supported. This enables people to speak openly about their condition and the challenges that they may face, which can sometimes be difficult for people to do around others who do not share the same experiences.
The importance of this is underscored by medical groups such as the NIH, who write that “rare disease support groups are an important source of emotional and practical support for many patients,” and that they allow people to feel more “empowered and hopeful” about their condition. The NIH also reports that meeting others with the same condition can increase the ability for people to advocate for improvements in areas where people are having problems. The Mayo Clinic agrees with these findings, and adds that support groups and events can “provide you with an opportunity to be with people who are likely to have a common purpose and likely to understand one another”. They can be very beneficial for the mental health of people with rare conditions, and can help them to feel “less lonely, isolated or judged,” and can reduce anxiety, distress, and depression.
Overall, meeting others who have similar experiences and backgrounds can increase one’s feeling that they are a part of a supportive community, and can allow for a greater group effort in advocating for ways to help each other. Group discussions amongst those who have a rare condition can allow for communication about what is important for each person, and this can be used to better inform the medical, education, and political fields about the best ways to address that condition.
Though TS may provide trials and challenges for people, we know that when we bring people with TS together, they forge lasting friendships. These types of events can help provide people with positive experiences and thoughts about having TS!
“Friendship is so weird. You pick out a random human you’ve never met and you’re like, ‘This one, I wanna go on adventures with this one.'” Unknown Author
Print out this flyer and pass it out to your TS friends so we can meet as many new people as possible!
Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review – NIH
Support groups: Make connections, get help – Mayo Clinic
Written, edited, and designed by Catherine Melman-Kenny, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023