We’re happy you found us! It’s important that you’re here. Turner Syndrome (TS) is a genetic condition that affects every 1 in 2,000 females randomly. Early diagnosis of this lifelong condition is essential to long-term health outcomes. Whether you are directly affected by TS, a medical professional, or just passing through, it’s important that you recognize the signs to help lower diagnosis age.
Those affected may or may not exhibit these common characteristics.
All of the resources you’ll find here are completely free for you. We do not charge membership dues to anyone because we believe in making lifesaving information accessible to those who need it most. Spend some time browsing through our website to learn about every aspect of Turner Syndrome!
Christina is a woman who has Turner Syndrome, a wife, and a teacher. In this monthly blog series, she shares her experiences living with Turner Syndrome.
This month I would like to shed some light on the open-heart surgery that I underwent last year, and how self-advocacy led to a life-saving intervention. I hope that you can learn why it is vital for Turners patients to advocate for themselves. It is important to be very upfront with your doctor about your symptoms, as you know your body better than anyone!
I have vivid memories of my mom researching Turner Syndrome and any symptom or complication that I had. I can still hear her telling the doctors, “Here is some literature for you to read and study. If you have a Turners patient you should know about Turners.” She was the first self-advocate for my health. It is simply just reality that not many doctors know about Turners. That is why all of the resources available to us, such as the Turner Syndrome Foundation, are crucial. We can learn from each other and informed doctors by sharing experiences, studies, and research. This way we can help each other to better understand our health needs.
In September of 2018 the need for self-advocacy became a shocking reality to me. I had suffered through a summer of stomach pain and gastrointestinal issues, and was diagnosed with Celiac Disease. Naturally, everyone thought that my pain was due to eating food with gluten in it, along with the fact that I had only recently been diagnosed so my body was still healing and repairing itself. One night in September, as I was eating dinner, I started to feel like my throat was closing and soon I passed out. I was rushed to the emergency room where they thought I had had a stroke. After a battery of tests for a stroke they sent me home saying I probably had a virus or was dehydrated, even though they could not get a pulse on me.
After a week and starting my new school year as a teacher, I finally got my answer. I went to Urgent Care with symptoms of continued lightheadedness and fatigue. A CT scan determined that I had an aortic dissection, and I was rushed for emergency open heart heart surgery.
This experience taught me that you have to advocate for yourself. If I had listened to the doctors who said I had a virus or was simply dehydrated, who knows where I would be today. But, I listened to my body and spoke up because what I was feeling was not normal for me. I also learned that everyone presents symptoms differently, so you really need to trust yourself. It is okay to question a doctor or present them with research. As patients who have Turner Syndrome, it is vital that we share everything we know with our doctors to increase the community of knowledge and resources.
Christina has presented a valuable lesson in self-advocacy. Listening to your body and speaking up to your health care provider is important to ensure your best possible health. You can learn more about common cardiac problems in Turner Syndrome women and girls on our website.
Camp Carefree is a wonderful camp in North Carolina that is offering a week of camp for girls who have Turner Syndrome this summer! Each week in the summer, they host children that have various health challenges. They offer an inclusive experience that can accommodate the needs of many children. Best of all, Camp Carefree offers this experience free of charge for all campers!
From July 26 to August 1, girls who have Turner Syndrome will be among the campers for the week. Parents should visit their website to apply and find out more information. We hope you will take-up this opportunity for your girl to meet others facing similarities in life. The connections that can be formed within the Turner Syndrome community are truly valuable.
The Camp Carefree application is open on a first-come, first-served basis, so make sure to fill it out as soon as possible!
Do you live in the northeast? We have our very own Autumn Retreat that has reduced ticket prices this year, and we offer scholarships. Read more on our website.
Lori is board member for the Turner Syndrome Foundation. She has created a community of support for Turner Syndrome through her love for scrapbooking. Lori’ daughter, Julie, was diagnosed at six weeks old. When it came to caring for and loving her daughter, at first she felt that it was best to keep Julie’s diagnosis within the family. However, this decision did not last long. She she soon realized that there support for the TS community, and opening up about her daughter’s diagnosis has allowed her to access it. Lori has used her love of scrapbooking to talk about TS and raise awareness among her friends.
Lori is very passionate about scrapbooking, which inspired her to create a Blog Hop in honor of Turner Syndrome Awareness. Other women who have scrapbooking and crafting blogs participate in the effort to raise awareness. This allows a wide audience to learn about the condition and has brought forward a wave of support. This, she feels, has impacted her family and the community in a positive way. Lori’s effort has impacted so many people. She was able to use her passion to start a conversation about Turner Syndrome.
Through scrapbooking, Lori has met incredible people and joined many teams of crafters. Being inspired by her awareness efforts, many of her fellow creators have taken initiative to raise awareness using their own platforms and crafts. For example, other crafters have created stamps, cards, and more that have been sold to benefit TSF.
The scrapbook teams she is involved with include:
Scrapy Land Design Team, Scrapy Land sells dies
Crafting, like any hobby, can be an extraordinary part of anyone’s life. You can follow Lori’s example by turning your passion into something that contributes to the greater good. Her Blog Hop is an example of making a difference within the community in which you are a member. Her story shows that when others learn about TS, they will be passionate to get involved in raising awareness as well.
We are so lucky to have Lori’s support for the Turner Syndrome community. She continues to combine her passion for scrapbooking and love for her daughter to create a positive impact on the Turner syndrome community. Additionally, her story illustrates the ripple effect of positive change that begins with just one person. Thank you, Lori, for showing your support and commitment to all women and girls who have Turner Syndrome.
We all have a passion! Whether it is a group we belong to, a game we play, a hobby, or even that feeling of warmth we get in the midst of helping others. Liz Carmines of TSF is working with many individuals to get involved in our mission of raising awareness of Turner Syndrome. Let Liz know what you do to create awareness and how you think you might benefit this cause. She would love to hear from you! Email her at: firstname.lastname@example.org
The University of Texas, Houston, recently hosted their annual “Turner Syndrome Community Day.” This is an event for patients and families to learn about a variety of health topics in a series of presentations. From clinical care guidelines, to dental health, to transition to adulthood, it is a comprehensive and informative workshop. There were topics applicable to both women and girls at every stage of life. Fortunately, they have uploaded a recording of the whole event, so no one has to miss out on the valuable information shared!
You can view the recording by clicking the button. Timestamps for the video’s contents are also listed below.
UTHealth has a Turner Syndrome clinic that provides comprehensive care to patients who have TS! This is an ideal location for women and girls who have Turner Syndrome to visit multiple specialized doctors in one visit. Find out about other TS clinics across the U.S. on our website.
Our goal for 2020’s February Awareness Month is a big one- we want to raise awareness of Turner Syndrome in every state! We hope that outreach to communities across the country can develop so that women and girls in every corner can see that there is support available to them!
There are several actions you can take to help us with this goal, but let’s jump straight to the most important one for now:
That’s right, our goal for 2020 is to see an event happening in every state throughout the month of February. Any event, big or small, that has a focus on TS awareness will take us one step closer to our goal! Join us this February by hosting an event in your state, or teaming up with others in the community to co-plan an event. A great way to meet others to collaborate with is via our state Facebook pages.
…and, the list goes on! The options are endless, and many take very little organizing. Don’t let your state be left out in this year’s Awareness Month! Help us start 2020 strong by raising awareness in every state!
We are so glad you asked! Once you decide to plan an event, let us know on our website so we can work with you on planning and add it to our calendar and map to inform others to save the date. We will send you all the materials you need for outreach like posters, social media images, information pamphlets, and more, so you are equipped to raise that awareness! Be sure to follow along on Facebook to see our progress.
If your state already has an awareness event planned for February, please don’t let that stop you- the more the merrier! Or, consider teaming up with the event organizer to develop your state’s event even further.
The more events and the more awareness we can raise, the better!
As if raising awareness of TS and connecting with the community aren’t enough incentive, the first event organizer who registers will automatically receive some TSF merchandise to rock at their event. Plus, one other lucky event organizer will also win some merch! By registering as the event organizer you will be entered into a random prize drawing. The winner will be drawn at the end of January, and the items will be shipped to you, on us.
She is a daughter, a sister, a friend. Women and precious babies diagnosed with Turner Syndrome require a lifetime of specialized care. This site has been created for providers and consumers with open access free from membership dues. TSF operates through the generosity of individual and corporate grants and donations. The complexity of this syndrome requires a greater philanthropic support to increase the capacity to foster healthier communities. We invite you to get involved and give generously to support this women’s health initiative.
Together, we commit to advance this mission!
In our second Twitter chat for Turner Syndrome awareness, we talked about health concerns. It was insightful to hear so many perspectives on the condition. As we learned, TS affects every woman and girl differently. There are some more common symptoms such as short stature, infertility, and cardiac issues, while even these are quite varied. However, you will see in the highlighted comments below, there are different health concerns at the forefront for each person.
We have been hosting Twitter chats weekly in the month of February. We hope to raise awareness through these conversations and also encourage connections to be formed. Please join us on Wednesday the 19th and 26th at 8pm EST to share your perspective in our Q and A!
Here are some excerpts from the chat:
This was a wonderful discussion about health care and Turner Syndrome! We are thankful to every participant for sharing their perspectives in the Q and A.
The responses show a range of experiences, some women being better-served by the health care industry than others. We are very glad for those who have found quality providers who truly understand TS and their needs. A common thread was the feeling that there could be a more comprehensive understanding of Turner Syndrome.
On our website we have many pages and resources that aim to help everyone affected by Turner Syndrome understand their health better.
Additionally, our Patient Handbook on Turner Syndrome is a helpful resource for tracking your health care by knowing what steps you should take. We hope this can be a comprehensive guide to help you coordinate doctor’s visits, treatments, and more.
Finally, take a look at our website to see if there is a specialized center of care near you! This is a place that is equipped to provide care for a variety of needs of a Turner Syndrome patient. Often times, they have specific clinic days in which you can see most of your doctors on one day!
We hope you have learned from these perspectives on health care from Turner Syndrome women. We invite you to participate in the Twitter chats that will take place in February and beyond!
Have you ever wanted to learn more about your diagnosis of Turner Syndrome? Then this is the perfect book for you! Our new Turner Syndrome Patient Handbook includes all the resources you need to understand TS and the health factors associated with it. Our handbook will empower you to organize your health records along with gaining knowledge of Turner Syndrome!
This handbook is the perfect gift for this holiday season! You can keep track of your health records and learn more about TS in the upcoming year. This handbook will help you look back on your TS journey and understand your health. This will be a great gift for anyone diagnosed with TS and their caregivers. More importantly, every doctor has a shared resource to learn about the patient’s health.
If you or a loved one has Turner Syndrome or is unaware of what TS is then this is the perfect book for you. Below is a link to our new Turner Syndrome Patient Handbook, a great gift this holiday season!
by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF
Sometimes in our rush to think about awareness as big events and campaigns, we forget that awareness is, above all, personal.
Connection is the heart of Turner Syndrome awareness. Communication is the heart of connection. Talking and writing are the heart of communication. Awareness begins with talking and writing.
I am new to talking about Turner Syndrome. I have been writing about it for a few years, but talking about it is a different thing. Building relationships with strangers connected to Turner Syndrome is something I had never done before deciding to host the Butterfly Dinner, an event to bring people living with Turner Syndrome and their families together. I decided to host the Butterfly Dinner as part of Connect Miami, a community-wide initiative that seeks to create relationships and raise awareness across differences.
A wrestling match of thoughts started the minute I let Connect Miami know about my Butterfly Dinner idea. Do I really want to be vulnerable? Will people even come? Am I ready to come out from behind my computer and actually talk with others face-to-face? Despite this noise in my head, I contacted several Turner Syndrome organizations, reached out to medical professionals who treat women and girls with Turner Syndrome, and joined Turner Syndrome social media groups. Each time, telling my story and connecting with other people was woven into the fabric of nurturing the Butterfly Dinner.
The day of the event was filled with nerves, joy, and wrangling. There were things to be purchased, rooms to arrange, and plans to be executed. I remembered, while running here and there, that this whole thing (the reaching out, the looking inward, and the stepping forward) was part of something bigger. I thought about the fact that this was just the beginning of an ongoing and important challenge I was accepting. The challenge to connect with others, not just people with Tuner Syndrome, but all people.
The guests arrived and the party started. Conversation flowed amidst openness and kindness. Comfort filled the room. Five people, in addition to my husband and myself, were there. We shared common stories as information wrapped in personal experience made my head nod. We understood each other. The party ended with a group picture and hugs.
Communication leads to connection, and connection leads to awareness.
Hosting the Butterfly Dinner taught me a few things. I learned reaching out doesn’t have to be a huge deal. I learned that connecting from our heart, from wherever we are, through our fears and doubts and excuses, is a true blessing. It is felt inside our muscles and bones, to the very core of our being, and reverberates in our world. That is the heart of connecting, and ultimately of raising awareness. I will continue to reach out and be the person who writes about her Turner Syndrome experience to raise awareness. The one who who invites, who says yes. I will be the door holder, the smiling jogger, and the attentive person at the grocery checkout. There will be a true butterfly effect. Small efforts like the Butterfly Dinner have great impact. Communication leads to connection, and connection leads to awareness.
Katie is so right that raising awareness starts with a simple conversation! When more people learn about Turner Syndrome, that allows for positive change for this community, leading to improved life outcomes.
You can host a meetup just like Katie did! Whether at your house, a park, or a restaurant, meetups are a way to form personal connections that will make an impact. Schedule your meetup and we will support you along the way!
Hello, Turner Syndrome Foundation community! My name is Kierstyn Holly & I am the Social Media Coordinator here at TSF. I am currently a junior Public Relations major at Monmouth University where I intend to gain knowledge and experience in the fast paced world of Public Relations. Not only do I go to school but I also love watching TV shows, volunteering, hanging out with friends and family, oh and I absolutely LOVE to travel!!
I came to the Turner Syndrome Foundation when I saw they were looking for someone to help out with social media, Perfect!!! I found a job that needs what I intend to do for the rest of my life. Little did I know what an impact this wonderful organization would have on me. Not only do I get to do what I love everyday, but I also get to learn & experience new things. I absolutely love working for an organization that cares about advocating as well as finding ways to help those who live with Turner Syndrome get the help they need to live a healthier life!