•
•
•
•

You are more than your diagnosis
Everyone of us is unique and original

Meghan’s tips for transitioning to adult care
“ I was nervous of course because I had grown up with the children’s hospital and was now in the care of a doctor I didn’t know.
The most important thing I learned was to ask questions and be involved.
Unlike paediatric doctors, these doctors move quickly and need you to let them know when you need clarification or have a concern.”

What do I need to know?
What do I need to do?

Here’s what my friend Kasey says
“Its important for us to understand what we are living with… so now the main question is how can we simplify this so all age groups can understand.
Creating an app or a game that our age group could play and learn about the condition without even knowing they are learning.
Personally, I am 16 and still don’t fully understand it
Now making an app isn't the easiest…..”
It wasn’t easy …but we did it !!

Center for Young Women's Health

What does it mean to you?

www.womenshealthmatters.ca
Cognitive fitness means how well the brain performs its many tasks… memory, concentration, logic and processing. Cognitive fitness means learning to think through problems, find solutions, and try new things
Emotional well-being is accepting yourself and being comfortable with who you are. Emotionally well people have learned to accept and express their own feelings. Some important parts of developing your emotional well-being includes having goals and working towards them and being in a variety of healthy relationships

Counseling can help you to understand your feelings and problems and learn how to deal with them in your everyday life.

Psychological health means learning to adapt and respond to life’s challenges without being overwhelmed all the time.
Coping with changes and crises is part of good mental health.
Balancing multiple roles
Most women play more than one role in life: daughter, friend, student, employee. It can sometimes be challenging to be many things at once, and finding a balance between responsibilities is a life skill that many women must learn to do
Having meaningful relationships in life is an important part of being mentally healthy. As women, our relationships can be a great source of fulfillment.
Remember, we also need to have a positive relationship with ourselves

A Zoe Quote
When I was younger I always felt awkward talking about my body…now I understand that I need to embrace my body and take care of it

Why does it matter? How it helps, and yes… its hard

 Excess Weight
 Smoking
 Excess alcohol
 Recreational drugs
 Stress on the heart
 Stress on your arteries
 Increased blood pressure
 Breathing problems
 Impaired judgement
 Increases risk for diseases such Cancer and Diabetes

• Blood pressure
• BMI ( weight and height)
• Pap test
• Breast exam
• Lymphedema
• Skin checks for moles
Blood tests
• Thyroid
• Diabetes
• Kidneys
• Cholesterol
• Celiac disease

Women with TS are at increased risk
What can you do to decrease your risk?
• Maintain a healthy active lifestyle
• Don’t smoke
• Have regular check ups

Seeing your cardiologist once every year
Learning about any differences in your heart
Learning how to protect your heart and keep it healthy
Knowing how to get help when something doesn’t feel right
Don’t smoke

When your Heart needs your help
Knowing when you need to got the Emergency department
Aortic Dissection

Can be described as sharp, stabbing, tearing, or ripping
You may feel the pain below the chest bone, the sternum
It may moves under the shoulder blades or to the back
It may move to the shoulder, neck, arm, jaw, abdomen, or hips
The pain changes position, it may move to your arms and legs as the aortic dissection gets worse

It may feel hard to breathe, this is described as shortness of breath
You may have trouble speaking or swallowing
You may feel dizzy or feel like you are going to faint
You may be very sweaty
You may feel sick to your stomach or nauseated
You may vomit
You and your body may feel weak, maybe even numb
Your heart will be beating fast but it will be hard to feel your pulse in your wrist
You may look pale
You may feel scared or nervous

The chance of survival greatly improves when an aortic dissection that is found early and treated quickly
…What should I do to protect my heart???

www.medicalert.ca

I have Turner Syndrome and I am at risk of Aortic Dissection
I have a Bicuspid Aortic valve
I have a hx of aortic coarctation
I have high blood pressure
Sudden severe chest or upper back pain
Shortness of breath, difficulty speaking
Dizzy, weak, sweaty, anxious, pale
Weak but fast pulse

Turner Syndrome & the Heart
Tips & Recommendations for Heart
Health in Girls and Women living with TS

Benefits of Estrogen for women with TS
• Maintain regular menstruation with Progesterone
• Maintain sexual development
• Improved self-esteem
• May improve verbal and non verbal memory
• Decreases your risk for cardiovascular disease
• Improves Bone strength and reduces the risk of osteoporosis
It is advised to continue taking your estrogen until you are in your 50’s

 Everyone experiences their sexuality at a different rate
 Healthy sexual relationship should be honest and caring
 All young women should feel comfortable telling their partner when they are ready or not ready to have a sexual relationship
Center for Young Women’s Health

• Sexually transmitted infections/ diseases
• Yearly Pap test or Pap smear
• Sexual Function http://www.sexualityandu.ca/

My daughter is currently 11, I too was concerned when I was initially informed that my daughter would face infertility issues in her life, but then I realized that there are millions of women who are unable to conceive for a variety of different reasons. What I have done with my child is to discuss different options in having a family particularly adoption.
We have discussed that some people have babies and other people adopt their children and that it doesn't change that that child is still yours no matter how they come into your life. I hope that this helps.

Regular eye exams and hearing tests should be done every 1-2 years or as recommended by your doctor or specialist

 Good calcium and Vitamin D intake
 Weight bearing exercises
 Estrogen

"You can often change your circumstances by changing your attitude."
— Eleanor Roosevelt
And changing your habits!!!

BIG