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:
Gluten Sensitivity (or in severe cases, Celiac Disease)
Learning/Social Differences and Difficulties
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.
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:
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.
Girls with Turner syndrome will need to take some hormone replacement, due to the fact that their bodies can not make enough of some of them on their own. Some hormones that a girl with Turner syndrome may be deficient in include:
Thyroid Hormone (if they have Hashimoto’s)
if you are a young adult with Turner syndrome (like me) you may have had a doctor put you on a birth control pill and tell you that it will give you all of the hormones that you need. However, most birth control pills do not have real progesterone in them, which is essential to protecting you against breast cancer and to your over all health. I would recommend talking to your doctor about bio-identical hormone replacement. That is what I personally do. To read more about all of this, please see my book “As a Butterfly: Turner Syndrome Survival Guide” and read the ‘Commonly Overlooked Problems’ section and ‘Tips for You’ section. Make sure you ask your doctor about checking your level of all of the above hormones. (I was severely deficient in testosterone, which can have many negative effects. This is commonly overlooked in women, but girls with Turner syndrome may need it.) Having the correct hormone replacement will help you to feel and look better. Your overall physical, emotional, and mental well being will improve greatly when all of your hormones are balanced.
What have been your personal experiences with Turner syndrome? Please let me know in the comments section. Thanks for reading!
Hello everyone! Please check out my new (and first) e-book As a Butterfly: Turner Syndrome Survival Guide. In it I share with you my experiences having Turner syndrome and some very important lessons I learned. It is a must read for anyone with Turner Syndrome or who has a daughter with this condition. I hope you will enjoy it and find it useful.
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.
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
High Blood Pressure
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
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.