Turner Syndrome Foundation
Do you want to advocate for yourself but do not know what self-advocacy actually means? Struggling to find examples of being a self-advocate? This article can help you! We recently talked with members from the Turner Syndrome (TS) community to get their perspectives on self-advocacy. These women also share their personal stories about how they successfully became self-advocates.
What Does Self-advocacy Mean to You?
I feel that being a self-advocate means keeping abreast of the latest research about your medical condition and seeking out help when appropriate. As an advocate with TS, this applies to both medical and social issues.
Dr. Mary Gwyn Roper
There are many different perspectives on self-advocacy and what it means. Here is what some women with TS had to say:
“I feel that being a self-advocate means keeping abreast of the latest research about your medical condition and seeking out help when appropriate. As an advocate with TS, this applies to both medical and social issues. Know that there are resources, such as physicians and counselors familiar with conditions like TS, as well as the ability to receive extended time on tests/schoolwork. Asking questions is half the battle!” – Dr. Mary Gwyn Roper
“I have always thought of self-advocacy as being able to speak up and ask for what you need. And while that may be true as a surface-level explanation, there can be a lot more that goes in to it on a deeper level. It requires knowing what you need in the first place and having the courage to actually speak up and say something if things are not getting done.”
“With TS, there are so many medical issues that it can be hard to keep up with which screenings and tests should be done, and how often. It can also feel awkward to ask a doctor about something they may have missed. So I think that, if it seems overwhelming to keep up with it on your own, it is important to, at the very least, make sure your doctor is aware of where to find the latest guidelines for screening and treatment for TS. Ask them at each visit if there are any tests recommended in the guidelines for you to get right now. That way, you know there won’t be anything missed.”
“If it seems too overwhelming to do by yourself, see if a friend or family member would be willing to help by going to your appointments with you, or helping you make a list of questions or concerns to take to the doctor. Your health is important, and it is worth the effort to make sure everything is taken care of.” – Dr. Erin Shumans
“Self-advocacy means empowering yourself to get what you need and helping others with the same issues. Knowledge is power.” – Woman with Turner Syndrome
“Self-advocacy is communicating your wants and needs. For me, that means being a voice for TS. It’s important to me because it raises awareness and educates more people on the condition and our needs!” – Woman with Turner Syndrome
“My perspective on self-advocacy involves knowing your self-worth and being able to stand up for yourself in challenging situations. Along with that, listening to others’ experiences and needs is important.” – Woman with Turner Syndrome
Personal Stories
You know your child better than anyone. If something doesn’t sound right or you aren’t sure a medical treatment is working properly for them, speak up!
Lori Kobular, Parent of a Girl with TS and TSF Board Member
In addition to their perspectives on self-advocacy, the women we spoke with shared their personal stories about being a self-advocate:
Parent of a Girl with Turner Syndrome
“It is important as a parent of someone with a condition like TS that you use self-advocacy and become their advocate in both the medical and education realms. You know your child better than anyone. If something doesn’t sound right or you aren’t sure a medical treatment is working properly for them, speak up! I have had to deal with both medical and educational issues with my daughter, Julie.
“When Julie had her tonsils taken out, an overnight stay turned into a week-long stay at the hospital. Julie wasn’t acting like herself, and the doctors weren’t hearing what I was saying. I finally said to the primary doctor, ‘Look at her! She never goes anywhere without a stuffed animal or two, and right now she couldn’t care less about them!’
“The doctor agreed at that point and started looking for the problem. Sure enough, Julie was getting too high a dose of Tylenol with codeine. They quickly switched her to regular Tylenol. Soon, she started coming around. Her kidneys had begun to shut down, and once they stopped the codeine, she began improving.
“Then came school. When Julie left kindergarten for a first grade class for children with multiple disabilities, we had a notebook that went back and forth from school to home. Every day, the teacher would write how awful Julie was in class that day, which I didn’t feel was appropriate. So, I met with the Principal and the whole Child Study Team and talked to them about it. I brought an advocate with us to the meeting. Soon, Julie was switched to a different classroom, where she did much better.” – Lori Kobular, parent of a girl with TS and TSF Board Member
Turner Syndrome Patients
While it can be exhausting to have to do all of the legwork and advocacy yourself, you are not only helping yourself. You are helping other girls and women with Turner Syndrome lead healthy and fulfilling lives.
Woman with Turner Syndrome
“As a middle-aged woman with multiple medical issues likely related to TS, I have always had to self-advocate with my medical providers. I was not diagnosed until 18 or 19, when I went to the genetics department at the hospital at the university I attended. It was scary to go alone, but I did a lot of research and asked a lot of questions. Thus, I was able to educate myself and my doctors about my medical condition and things to look out for.”
“My research has never stopped; I am still learning. Recently, I read about aortic dissection on the TSF blog. I talked to my cardiologist, who has ordered a cardiac MRI to monitor it. While it can be exhausting to have to do all of the legwork and advocacy yourself, you are not only helping yourself. You are helping other girls and women with TS lead healthy and fulfilling lives.”
“Self-advocacy meant looking for an endocrinologist who I felt actually understood my diagnosis and needs. After five years, I now have both a cardiologist and an endocrinologist who are very knowledgeable about TS. I am super happy with them both!”
Everyone has their own perspective on and experiences with self-advocacy. Perhaps most important is to have the confidence to speak up about your needs and to spread awareness about your condition to others. There are many ways to be able to be an effective self-advocate. So, what are you waiting for? Go out there and advocate!
Written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation (TSF) intern and blog post writer.
Resources and Perspectives on Self-advocacy
TSF has many resources you can use to learn how to advocate for yourself or your loved one:
Webinars
TSF has webinars that can help you learn how to self-advocate, such as “Building a Relationship with Your Pediatrician,” presented by Dr. Alexis Capozzoli and “Rights of Students with Turner Syndrome in a School Setting,” presented by Fitzgerald & Sadove, PLLC!
To access these webinars, click here to register for the recordings.
Website
TSF also has many resources on our website that can help you become a self-advocate. Click here to learn more. You will also find links to insurance assistance, travel assistance, and reimbursement assistance. Understanding the resources that are available is a first step to self-advocacy!
Educational Booklet
Furthermore, TSF provides an educational booklet about how to become a self-advocate called A Lifetime of Advocacy: What Individuals and Families Need to Know. It is currently on sale for $2.50! Written by Valerie A. Powers Smith, Esq., TSF’s Legal Advisor, this book will help you learn how to self-advocate in a variety of health care service systems. It will also teach you how to find other federal and state resources that provide primary or additional healthcare coverage that align with your personal needs. Moreover, this book will help you learn how and when to arrange your lifetime plans to improve your personal health with conditions like TS.
When Valerie is not advising TSF, she spends her time advocating for individuals and families who have at least one child with TS or other special needs challenges in New Jersey, California, and Pennsylvania.
