November is National Family Caregivers Month!
An entire month to celebrate the contribution of more than 44 million Americans who volunteer to care for a family member, friend, or loved one. While caregivers can sometimes be overlooked, it’s important to show them just how appreciated they are. Join us in recognizing these amazing caregivers throughout November and beyond!
This year’s theme is “Supercharge Your Caregiving” – because even superheroes need tools! We’re sharing some tools below to help you manage it all and celebrate, too!
Thank you to everyone caring for a loved one with Turner Syndrome! We appreciate everything you do!
As a special thank you, you’ll be the first to see the 2018 TSF Annual Report! The Report shares everything we’ve been up to this year with your support! Want to get on the list to see it first once it’s released? Complete this brief form and we’ll send it right to your inbox!
By: Josey Petz, TSF Volunteer
I am sure not many of you know this, but women with Turners Syndrome can easily develop anxiety. I definitely have had anxiety for as long as I can remember. I am constantly worried about what other people think of me or if I am being too weird. The second they quit responding (because they’re busy) or their body language changes I immediately think it is because they don’t like me or are mad at me. I automatically assume people don’t like me right off the bat. I am a social person so I like being around people, but my anxiousness makes me awkward and then I completely shut down and don’t talk to anyone.
After years of dealing with it, I finally went to get help. I was a junior in college when I needed to get an internship for the summer and I was just beginning my search for one that was basically nonexistent or already filled when my anxiety got so bad it was almost crippling. I was lashing out at everyone because I was stressed by stress only I was putting on myself. No one wanted to be around me and I was crying all the time. Talking about it with my counselor helped me process why I was having anxiety, which helped. Knowing why can help prepare you for triggers.
A big trigger I knew was coming was when I was about to graduate college and had to decide what I was going to do next and begin my “big girl” job search. I tried my best to handle my anxiety about the unknown and impending adulthood I was about to face, but like most I had good days and bad days. This is how I handled it:
I hope these tips can help ease your anxiety. Find what works for you and go for it. I know when you’re in the heat of the moment it can be hard to stop panicking and remember to begin doing calming exercises. Knowing your triggers and signs that you’re going to freak out helps because you can preemptively try to stop your anxiety before it gets too bad. So, pay attention the next time you have an anxiety attack and reflect on what caused it and how to avoid it the next time.
Do you have a passion for blogging/writing? Join the Turner Syndrome Foundation as a volunteer. Complete the form at the link below:
Leave your comments below. How do you handle your anxiety?
The Turner Syndrome Foundation’s Autumn Retreat is an annual event. These are a sampling of photos.
To save an image: Click to enlarge, then right click and select “Save As.”
Introducing a New Turner Syndrome Foundation Cardiovascular Health Initiative
Cardiovascular health is a major concern for many people. Heart disease is the number one killer of women in the United States, with cardiac issues leading to death in 1 in 4 women. Given the high prevalence of heart disease among women of the general U.S. population, cardiac concerns among Turner Syndrome (TS) patients are even more striking, about 25-50% of TS patients suffer from some sort of heart problem.
Every day, lives are lost to the cardiovascular issues present in Turner Syndrome. To combat this issue, the Turner Syndrome Foundation has organized the Turner Syndrome Council on Cardiology (COC), a council of industry leading professionals to address the complex cardiovascular issues of this vulnerable population. The COC seeks to tackle the gaps in diagnostics, treatments, transition, emergency episodes, and preventative cardiac care. It is our goal that specialists will become knowledgeable on the components of cardiovascular health that affect Turner Syndrome patients in order to find the best care approach, ultimately reducing the high mortality rate.
This project honors all the precious lives that are burdened and lost due to cardiac problems. It is our mission to prevent further suffering and loss by equipping allied professionals with the armor of knowledge and resources to optimally address cardiovascular issues in Turner Syndrome patients.
The COC can only be possible with your contribution. You don’t have to be a doctor to save lives, your support is highly important and needed to reach optimal results. The hearts of these amazing girls and women are dependent on you. Please support this initiative joining the COC Campaign.
Our most sincere condolence to the friends & family of Turner Syndrome woman, Andrea Eden Levey, who passed away on Thursday, October 4th, 2018 from complications of aortic dissection.
Professional interest in the COC? Please submit a form below.
Advocating for Turner Syndrome is very easy: Put on a good pair of shoes, meet up with the group and tell your story!
Join us at Capitol Hill on September 12-13th and meet legislators to raise awareness and advocate for Turner Syndrome.
Eager to spread awareness of Turner Syndrome, Stella decided to share her Turner Syndrome journey. This courageous and beautiful young lady is making a difference. Watch her video, read her story and be inspired!
Don’t let anyone discourage you from being the best version of yourself. Turner Syndrome does not limit you to be great, and like Stella said: “it’s very easy to prove [anyone who disagree] wrong.”
You can learn more about Stella’s story at the link below.
What’s your plan of action after receiving a Turner Syndrome diagnosis? Leave your comments below, navigate through the “PATIENT” information tab.
Back to School
It’s that time of the year again – summer is coming to an end and parents are getting their children ready to go back to school. Every student follows a similar checklist such as buying new notebooks, packing up a backpack, and reviewing their new schedule. For Turner’s girls, adding a few more things to that checklist can help ensure that the school year goes smoothly.
Turner Syndrome is characterized by learning issues, which can include visuospatial organization and math abilities. It’s important that educators, school psychologists, and school nurses are aware of the implications in the classroom and are prepared to collaborate for the best outcome.
To help you with the transition of returning to school this year, we’ve created two guides! For older students, we have the “Back to school Survival guide,” which features a checklist of items you may have forgotten – like checking in with your school psychologist or purchasing your Emergency Contact Card! This is especially great for students making the transition to a new middle or high school!
For younger students, we have the “Super Student Adventure Guide” Going back to school doesn’t have to be a negative experience and this guide will help make it fun! With a superhero printable to color and kid-friendly checklist, going back to school this year can be an adventure!
Be sure to check out our website for more learning resources at https://turnersyndromefoundation.org/professionals/educators/learning-2/
Encourage your teachers to visit, too, to ensure they have all of the knowledge necessary to assist your student!
Good luck this year! We hope it’s the best one yet!
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