New discoveries are being made every day, and through trial and error scientists are learning more about how the human body works. Us girls with Turner Syndrome are even more complicated! (Don’t you feel special? No, really!) Unfortunately, we humans are just barely scratching the surface. Even many of those in the medical field still understand very little about Turner Syndrome. You are going to have to be your own advocate when it comes to your health issues.
I know, this is probably something you’ve heard a million times. But HOW do you do that, and what does that even mean? Well, let me give you a few things you need to ask your doctor about. In this article I’m going to go over a few commonly overlooked problems in Turner Syndrome.
In my brief 21 years of existence, I have learned many things the hard way. Hopefully by sharing some of them with you, you can avoid many of these all too common pitfalls. Here are the issues I dealt with while growing up that I wish I and my Doctor had addressed sooner or that I had been aware of at a younger age.
Here is a list of some Commonly Overlooked Problems in Turner Syndrome:
- Hashimoto’s Thyroiditis
- Gluten Sensitivity (or in severe cases, Celiac Disease)
- Learning/Social Differences and Difficulties
- Hearing Loss
- Cancer- Ovarian Dysgerminoma
To learn more about any of the above topics please discuss them with your doctor. Check out my book As a Butterfly: Turner Syndrome Survival Guide in the section “commonly overlooked problems for a more in depth discussion of some of the above issues. If you have Turner Syndrome (or are the parent of a girl with Turner Syndrome) please learn as much as you can about the above conditions. It could mean your life!
Ignorance about Turner Syndrome almost took my life. Educate yourself and make sure your doctor knows about your risk for the above conditions. Good communication is essential to becoming your own advocate and avoiding these commonly overlooked problems in Turner Syndrome.
Have a happy day, and stay safe and healthy 🙂
It has been a long time since I have written an article, but its great to be writing another post. The past two months have been insanely busy! Between going to Costa Rica, a business trip up North, moving, and many very exciting changes in our personal lives, we have been on quite a roller coaster ride! As the 1 year anniversary of my Cancer diagnosis passes, I am thrilled to be starting this new chapter in my life.
With all the craziness finally settling down a little, today I finally took the time to check turnersyndrome.org for the first time in quite a while. I was surprised to see that they had a whole new section on ‘Medical Advances’! I spent a long time looking over it and decided to write this post on Turner Syndrome and Heart problems.
For many years specific structural problems involving the heart have been associated with Turner Syndrome. Nearly half of girls with Turner Syndrome have some cardiac anomaly. Some abnormalities that are sometimes present include:
- aortic coarctation-narrowing of the artery leaving the heart
- bicuspid aortic valve-the aorta has two leaflets instead of one
- enlarged aortic valve-enlarged artery leaving the heart
- Hypertension– High blood pressure, which can result from a kidney or heart problem.
These heart defects can lead to an aortic dissection and can be fatal!
However, there is no need to be scared. 🙂 You don’t need to live in constant fear that your heart is all of the sudden going to break. They are simply something you and your doctor need to be aware of. No matter what your age you should be screened for these regularly. A cardiac problem is not always detected during childhood! Therefore your doctor will probably have you get an MRI of your heart every few years, even if there was previously nothing wrong detected.
One point I also wanted to stress is that there is believed to be a great increase of fatality during pregnancy with women who have Turner Syndrome. This is due to the aortic changes during the pregnancy. If you and your spouse are thinking of starting a family, make sure you discuss it in depth with your doctor, get a complete cardiac checkup, and weigh the risks!
Some ways you can decrease your risk of having heart problems are:
- Eat healthy
- Stay at a low, healthy weight
- Get screened regularly for problems
- Discuss your specific needs and risks with your doctor
- Smile 🙂 Stress can only tax your cardiovascular and cardiac system even more.
Keep those hearts beating strong! <3
Read more by checking out my E-Book As a Butterfly: Turner Syndrome Survival Guide!
If your daughter was recently diagnosed with Turner Syndrome, you may be confused with all the information you’ve probably been bombarded with, and worrying “What is going to happen to my daughter? What do I do?”
I know it can be devastating to learn, but there are things you can do NOW to ensure that your daughter still grows up to be healthy and happy. As a girl with Turner syndrome myself, I can assure you of this and would like to share with you some things I learned from personal experience so you don’t have to learn the hard way like my parents and I did.
Here you can read about Characteristics of Turner Syndrome to get an overview.
Now, here are some things that your daughter may be at risk for and experience as she grows up:
- Amenorrhea (no period)
- Celiac Disease or mild Gluten intolerance
- Hearing Problems
- Heart defects
- High Blood Pressure
- Horseshoe Kidney
- Learning Disabilities (nonverbal)
- Ovarian Dysgerminoma (a rare type of ovarian cancer)
Obviously every girl with Turner syndrome is completely unique and will have different needs. She will not experience all of these. Make sure your doctor is extremely knowledgeable about Turner syndrome and stay up to date yourself.
Here are some specialists you should take your daughter to see:
- Oncologist (probably one who specializes in gynecology)
Here is what I do personally to stay healthy, now that my brush with cancer is behind me:
- Gluten free vegetarian diet
- Hormone Replacement
- Regular exercise
I will go into more detail in my upcoming book “As a Butterfly: Turner Syndrome Survival Guide”, which will be available within the upcoming week. Please purchase and read this, as the above list is only an overview and I share more of my personal experiences. If you have more specific questions please feel free to contact me.
Thanks so much! 🙂
Shout out to butterfly @mckenzie_virgaa ! 🙂
“When I was three i stopped growing i took a blood test and three years later i was diagnosed with ts. I fight with a smile.”
#turnersyndrome #turnersyndromeawareness #butterfly #fightwithasmile #shoutout
Most girls with Turner Syndrome also suffer from Hashimoto’s Thyroiditis, a common autoimmune disease that effects the thyroid gland. This leads to hypothyroidism, or low thyroid function. Some of the symptoms of hypothyroidism may include…
Constantly Feeling Cold
Inability to Concentrate
These symptoms can be very subtle. However, needless to say, they dramatically decrease the quality of your life. Since the thyroid gland regulates your metabolism, if it is not working right, you will have a wide variety of symptoms due to slower metabolism. Treatment is usually thyroid hormone replacement, which is usually quite simple and safe. I was not treated for hypothyroidism until I was sixteen years old and had been suffering from it for years. Once I was treated, I finally felt much better, was able to think clearer, and had a much easier time staying at a healthy weight. Hopefully you will have the same results if you are suffering from this common problem among Turner Syndrome patients. Thyroid hormone levels are very important to have balanced, especially for us girls who have Turner Syndrome.
Here are some articles about hypothyroidism that I found very informative:
Thank you for visiting www.asabutterfly.org! My name is Michelle. (you can learn more about me and why I started this blog in the about me page.) I hope that this blog will be informative and helpful to anyone living with Turner Syndrome.