Friday, February 28, 2014

~ Rare Disease Day - Ectodermal Dysplasias ~

February 28th is Rare Disease Day! 
Rare Disease Day was started in 2008 to raise awareness to those in society who are affected by rare diseases. (more information can be found at the official website: Here)

I wanted to take a moment to bring awareness to a rare disease my siblings and I have, as well as briefly share my story.
My seven brothers and I have some of the symptoms of the rare disease, Ectodermal Dysplasia. 
Ectodermal Dysplasias are a group of over 150 heritable and or genetic disorders that affect the function and development of many different parts of the body. There is no cure for this disease, yet there are many ways to help those affected live with the defects the best way possible, like specific orthodontic and dental care.

The symptoms:
-Teeth: Teeth may be missing, be pointy, have wide spaces, and have a higher risk for cavities because of defected teeth enamel.

-Hair: The hair development of the scalp and body can be sparse or absent.

-Nails: Defects in the formation and development of finger and toe nails.

-Sweat Glands: Some diagnosed with Ectodermal Dysplasia cannot sweat due to dysfunctional sweat glands or are missing sweat glands completely.

-Skin: Ectodermal Dysplasias can affect the skin in many ways, skin may be thin and pale, dry, scaly and easily irritated to name some.

-Other: Missing fingers or toes, cleft lip and/or palate, and hearing problems are just some of many others.
(Check out: What is Ectodermal Dysplasia? for more detailed information)

If you are interested in learning more about the different types of Ectodermal Dysplasias I highly encourage you to visit the official website of the National Foundation for Ectodermal Dysplasias Here.

My brothers and I are affected most prominently in the teeth, which includes missing numerous teeth and the teeth we do have are pointy with large spaces. In my own case, I am missing roughly 10 teeth. After six years of orthodontic and dental work, with the help of two retainers, my teeth and smile now look "normal".

When I was five years old, my parents first discovered the existence of this disease as they were exploring the options of how to help my oldest brother receive treatment for his extreme defects with his teeth. They soon realized I had it as well, and decided not to let me feel as if my defect defined me. They never mentioned to me that I had ectodermal dysplasia until I was roughly the age of 11, and even at the time, it was never treated as a terrible thing. The defects of my teeth were noticeable up until after I turned 16, however, I never thought of myself as different from other girls and I never let my disease affect how I perceived myself as a person. I knew that my smile was different and that my teeth were strange, but I didn't let it stop me from smiling. I am strongly convinced that how my parents handled the situation and raised me greatly contributed to my experience dealing with the defects of my teeth. I am deeply grateful to my parents who taught me the importance of the valuing inner beauty as I was growing up.

While growing up, living with Ectodermal Dysplasia taught me just how important it is to place inner beauty above physical, outer beauty. I learned at an early age that I felt the prettiest when my heart was happy and I could be myself regardless of how I looked on the outside. How my parents handled the situation positively contributed to my acceptance of the disease. I cannot recall a time where I was unhappy with my defects, because for as long as I could remember they were a part of who I was and am. There were times when I would worry about it, but I never wished I were different from how I am or let it affect my happiness.

I don't usually talk about my disease, and not many people who know me are aware that I have a form of Ectodermal Dysplasias. However, recently I have been feeling called to talk more about what I have learned from living with this disorder in order to help others and in particular, young girls, with the importance of inner beauty.
I would like to talk more about my journey with acceptance, inner beauty and ectodermal dysplasia in the future, so be sure to look for that soon!

Today, take a moment to learn more about rare diseases that affect those around us.

Con amore in Cristo,


Friday, February 14, 2014

~ Gratitude ~

"To be happy, what you need is not an easy life 
but a heart which is in love." 
- St. Josemaria Escriva

Sometime this year I would really like to send out "letters of gratitude" to people who have touched my life. This is an amazing video and it is so true. Obviously though, the true #1 source of happiness is really God.(: Check this out! 

When we express gratitude, we let pure love pour out from deep within our hearts. It is an expression of love that is genuine and vulnerable. The kind of love that can choke us up when trying to get the words out, be a tearjerker, and the kind that requires us to swallow our pride. Yet, it is the kind of love that sets your heart free and provides healing and unexpected happiness. It is the kind of love that melts the hardest of hearts. It is beautiful. 
St. Josemaria simply, but powerfully sums up what it means to be happy. One does not need an easy, care-free life without tribulations, no. It is a life with all its struggles and joys, experienced with a heart which is in love that brings happiness. You may be thinking, "Yes! Another reason to hate Valentines day!" No, because a heart which is in love, means to love each and every person in your life. To love God, to love yourself, to love strangers, and to love especially those least among us. A heart that is truly "in love" is a heart that is large enough to express sincere love to each person it encounters. 
When we communicate our love to one another, many times it is revealed in gratitude. Part of being happy means valuing the lives of others and being grateful for each life placed in our own lives. 
To express heart-felt gratitude is choosing to love, therefore, choosing happiness. 
Let that sink in.

I thought this subject would be perfect for Valentines day because Valentines day is most likely one day in particular whom those in a state of singlehood are the least grateful. Whether intentional or not, it can happen even to the best of us. We all want to be "in love" with someone, and someday that day may come, however, we each have the call to have a heart in love with not just one, but all. That starts now. Valentines day is not just for those who are married or in a relationship, it is a day for all to express gratitude and love and celebrate the lives of everyone in our life. Those of us who are single, let's be grateful for our family, our friends, and our own lives. Let's spend today, and every day onward, communicating our gratitude and love in word and deed to those around us. Let's be a blessing to those who have been a blessing to us, and especially so if they haven't. 
Sure, indulge in a sappy love movie with some ice cream tonight, I may join you. Nevertheless, let's not forget St. Josemaria's wise words, "To be happy, what you need is not an easy life but a heart which is in love." 
That begins with gratitude

Food for pondering:
"To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. The alternative to tragedy, or at least to the risk of tragedy, is damnation. The only place outside of heaven where you can be perfectly safe from all the dangers and perturbations of love is hell."
- C.S. Lewis

Happy St. Valentines Day!

Con amore in Cristo,

Sunday, February 2, 2014

I absolutely love videos like this. They never fail to make me smile! Life is beautiful.

Check out this one too! 

Now... Who wants to go travel the world with me? (:

Saturday, February 1, 2014

Never forget to...

"Don't ever forget to love." 
- St. Maximilian Kolbe

We all have those times when we are struggling to be happy.

Struggling not to just melt down. Struggling not to snap back at whoever says the wrong thing at the wrong time. Struggling to not despair when your heart breaks or when your life is unexpectedly turned upside down. Struggling not to be mad at those who don't understand, or yourself, or God.

Sometimes it is hard not to be just plain mad or upset at the world when you fail to do things that are important to you or fail to be loyal to things you are committed to, whether it is in your control or not.

When one is hurt, angry, irritated or frustrated, among the whirlwind of many emotions, one very important thing is missing.


The past month has been an extreme test of happiness for this lil' bluebird...

Not too long ago I came across this quote by St. Maximilian Kolbe and it definitely hit me hard. When my struggles affect my actions and behavior toward others, causing ill-feelings toward them, what is missing? When my temper is awfully short regardless of if I were provoked or not, what is missing? When I choose to react with anger or sadness when I have to deal with something unpleasant, instead of choosing to take it cheerfully and decide to be happy, what is missing? 

In all of these situations, I am making the choice not to love. Choosing not to love God for bringing me to that point, choosing not to love others, and choosing not to love myself. 

I am choosing the easy way out. I am choosing sin. 

I am forgetting to love.

Day in and day out, we are all tempted in some way or another, to forget to love. 

In Sirach, part of Chapter 7, verse 21 states, "Let your soul love..." When I forget to love, and choose hatred and sin, I am not letting my soul love. 

Think about that.

I am not letting my soul love. 

Every day ask yourself if you are letting your soul love. 

Am I loving myself? 

Am I loving each and every person I speak to or am surrounded by? 

Am I loving God, my loving Father? 

Con amore in Cristo,