Dealing with Stress and Anxiety

Dealing with Stress and Anxiety in Turner Syndrome
Dealing with Stress and Anxiety

Hello again everyone! I can’t believe summer is almost gone already. Time does fly when you’re having fun, or just plain busy. Which brings me to my topic for today’s post: Dealing with Stress and Anxiety.

Stress is something everyone in this crazy world deals with every moment of every day. Us girls with Turner Syndrome are no exception, and in fact we have the added stress of the health issues and differences we deal with on a daily basis. How can you deal with it all?

Here are 5 things you can do today to help you cope with whatever stressors you may have in your life, whether you have Turner Syndrome or not.

1: Stop

That’s right. It may sound much easier said than done, but the first thing you need to do is to STOP WORRYING. It has been said that “Worry is a misuse of the imagination.”

2: Think Positively

Our thoughts have consequences. Choose to think happy things. 🙂

3: Exercise

Exercise is a very good stress reliever, especially intense physical activity such as sports or weightlifting. I try to go to the gym at least 3 times a week to do weight lifting, and do other types of exercise like soccer, stretching, and pilates on the other days.

4: Get enough sleep

Sleep is vital. I have a very overactive brain, and I’m sure I’m not alone. Make sure you get enough mental and physical exercise during the day. Make your room and bed as comfortable as possible. Go to bed early and avoid using electronics in bed (yes, that means no more watching netflix or texting until midnight lol). Another big factor in sleep quality is hormone balance, so work with your doctor to make sure you are on the right doses of testosterone, thyroid hormones, estrogen, and progesterone.

5: Do Something Creative

I find doing creative things like writing, playing piano, drawing, and doing crafts to be a very effective stress reliever. They are so much fun too!

Thanks so much for reading, and hope you find these tips helpful!

Turner Syndrome and Nonverbal Learning

Turner Syndrome and Nonverbal Learning Differences

Turner Syndrome and Nonverbal Learning
Turner Syndrome and Nonverbal Learning Disorder

Most girls with Turner Syndrome have a very specific neurocognitive phenotype. Scientists are still trying to understand it. No two people are the same, but there are a few characteristics that seem to be present in most of us girls with Turner Syndrome. It is usually broadly categorized as a Nonverbal Learning Disorder.
Despite overall normal and average IQs, most girls with TS have some difficulty in the following areas…

Visuospatial Perception
Visuoperceptual Abilities
Executive Function
Nonverbal Memory
Working Memory
Attention
Organization and Planning

Some areas girls with Turner Syndrome seem to be above average in are…
Verbal skills
Writing
Reading

There is still much to learn about the Turner Syndrome girl’s brain and what makes it unique. It is thought to be linked to part of the missing X chromosome and originate from the right hemisphere of the brain. Many studies are still being conducted about this.

What does this mean for you as a girl or woman with Turner Syndrome?
You may have difficulties in areas of life such as…
Social skills and relationships
Mathematics
Driving/Navigating

Some things you will probably be better than most at are…
Reading
Writing
Verbal skills

Every girl is different. For example, I am a really fast reader. However, some girls will have a little trouble with reading. The point is that no two people are the same, even if they have the same condition!

So what can you do to deal with the learning differences that we Turner Syndrome patients have? Well, here’s what helps me:
Get Tutoring in math
Consider homeschooling
Practice your social skills, particularly eye contact
Write! It is probably something you are very good at. Personally I find it very therapeutic.
Smile! 🙂
Make sure it is really safe for you to drive. There is absolutely no shame in not being able to!
GPS is a wonderful thing, and can help you not get lost

Above all, an understanding family will be a great help to a girl with Turner Syndrome and Nonverbal Learning Disorder. Children with this may have a little more trouble making friends, keeping their things organized, get lost often, and have a short attention span or be forgetful. Especially in a very intelligent child, this can be confusing and frustrating to a parent, who may mistake this as misbehavior or laziness. A child with NLD simply has a different learning style. I got overwhelmed very easily as a child and still have anxiety problems that I struggle with. However, life can be successfully navigated with a Nonverbal Learning Disorder. Everyone has a different learning style. It can be a good thing! A little patience and determination can go a long way.

Whatever learning style you have, remember to view it as an advantage rather than a hindrance! 🙂

This was a super fast overview. If you want a more in depth discussion of Turner Syndrome and Nonverbal Learning Disorder please check out the chapter about it in section 3 of my book As a Butterfly: Turner Syndrome Survival Guide.

Thanks so much for reading!

Commonly Overlooked Problems in Turner Syndrome

Commonly Overlooked Problems in Turner Syndrome
Commonly Overlooked Problems in Turner Syndrome

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:

  1. Hashimoto’s Thyroiditis
  2. Gluten Sensitivity  (or in severe cases, Celiac Disease)
  3. Learning/Social Differences and Difficulties
  4. Hearing Loss
  5. 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 🙂

Turner Syndrome and Heart Problems

Turner Syndrome and Heart Problems

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:

  • Exercise!
  • 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!

New Diagnoses: My daughter has Turner Syndrome…What do I do?

My Daughter has Turner Syndrome...What do I do?
What to do and expect when your daughter is diagnosed with Turner Syndrome

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
  • Diabetes
  • Hearing Problems
  • Heart defects
  • High Blood Pressure
  • Horseshoe Kidney
  • Hypothyroidism
  • Learning Disabilities (nonverbal)
  • Lymphedema
  • 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:

  • Audiologist
  • Cardiologist
  • Endocrinologist
  • Nephrologist
  • Neurologist
  • 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! 🙂

Hypothyroidism

Hypothyroidism

Turner Syndrome and Hypothyroidism
Hypothyroidism: Common Health problems associated with TS

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…

Weight Gain

Constantly feeling cold is a symptom of Hypothyroidism
Constantly feeling Cold

Constantly Feeling Cold

Depression: another symptom of hypothyroidism
Depression is another symptom of Hypothyroidism

Fatigue

Depression

Inability to Concentrate

Constipation

Hoarse Voice

Slowed Growth

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:

http://www.mayoclinic.org/diseases-conditions/hypothyroidism/basics/definition/con-20021179

http://www.webmd.com/a-to-z-guides/hypothyroidism-topic-overview

http://www.endocrine.niddk.nih.gov/pubs/hypothyroidism/

http://www.ncbi.nlm.nih.gov/pubmed/3168347

http://www.ncbi.nlm.nih.gov/pubmed/7828358