Rare Disease Day 2014 – Through Meghan’s Eyes

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her.  She was so thrilled by his genuine nature, and his true interest in her.  Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!

Meghan chatting with Borough President Oddo!

Today,  Meghan addressed the school about what it was like to live with a Rare Disease.  She spoke eloquently and passionately.  The students were phenomenal.  She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain.  Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure. 

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide.  Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease.  There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments.  Treatments and surgeries can be helpful, but they don’t fix the problem permanently.  Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose.  When you have a Rare Disease you have to be brave.  Individuality is very important. No matter who you are, EMBRACE it and  be BRAVE.  Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE. 

 Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL.  All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE. 

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer.  Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin. 

 I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too.  The support I get from my family is incredibly inspiring.  I REALLY want to make more people aware, as you can see. 

 All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

 When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who  I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this. 

        Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom!  Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

10 thoughts on “Rare Disease Day 2014 – Through Meghan’s Eyes

  1. Wow! She has more courage than me! I have to do a speech tomorrow for a conference on the financial and social repercussions of living with a rare disease, and I am petrified! This helped me gain confidence 🙂 Thanks Meghan! Have a good Rare Disease Day 🙂

  2. Pingback: Fun Fact Friday 2/28/14 (late) | hopeforheather

  3. Pingback: “A Friend in Borough Hall” | beatingcowdens

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