I wanted to make the 200th post of “BEATINGCOWDENS” extra special, so I asked my (almost) ten year old daughter Meghan to be the Guest Blogger!
1. How has Cowden’s Syndrome changed you?
Cowden’s Syndrome hasn’t changed me. It has always been a part of me. Knowing I have Cowden’s Syndrome has only made me more aware and more prone to understanding my body.
2. What are some things you want people to know about being a kid with Cowden’s Syndrome (PTEN Mutation)?
It’s hard not to be like other kids, but I am really glad all of the problems are found earlier than later.
3. What makes you glad you were diagnosed?
My diagnosis forced me to look at what was good for me and what wasn’t. I had to give up soccer and dance, but I LOVE swimming, and I feel like I am getting better at it every day. I am always trying to improve physically because I need to stay strong. I am glad I found a way to compete with other kids, and not always be last. I am also building swimming friendships.
4. What makes you sad/scared/ or worried you were diagnosed?
I feel more vulnerable, and sometimes a bit weaker because I can’t do everything the other kids can do. I can’t run and play outside like them. My weak immune system causes me to get more viruses, and I worry about thyroid cancer too. I try to find the positive in every negative and I don’t let worry get the best of me.
5. What is the most frustrating part of Cowden’s Syndrome?
I go to so many more appointments than any of my friends, and lots of times we have to wait forever. I keep busy at my appointments with my books, my iPad, and my Rainbow Loom. It is taking up the first few weeks of my summer vacation, and I would rather be home and bored than running back and forth to Manhattan every day!
6. Do you have any kids that you can talk to about your diagnosis?
I feel like I have three kids I can really talk to that understand. My friend Conner is in Colorado. He also has Cowden’s. He is about my age and really funny. Also, I can talk to my friend Georgia in Australia. She is also about my age, and even though we are really far away from each other, she is a very nice girl. I am glad I know her. I have been able to FACE TIME with these far away friends. Sometimes the time difference gets tricky, especially to Australia. The first time I saw Georgia it was 10PM here! We talked for over an hour!
I also have a friend on Staten Island, who I feel like I can talk to. Even though its only been a short time, I hope our friendship continues to grow.
7. What do you hope to do when you grow up?
When I grow up I want to be a genetecist.
I feel like I will know a lot about it. I also want to do agility training for dogs. Right now I have two dogs that I love very much, Allie, and Lucky. I always want to have dogs.
8. How do you plan on using your diagnosis to make a difference in the world?
I plan on making all rare diseases more well known. I want to do a movie night at my school and raise money to donate to The Global Genes Project – they help all rare diseases.
I want more people to understand rare diseases, and do more research so there can be a cure.
But, all that starts with awareness. Last year I asked my parents for something to wear, a symbol (like a pink ribbon) that would represent me, and my struggle with Cowden’s Syndrome. The Global Genes Project uses a denim ribbon and the saying “Hope It’s in Our Genes.” I really like that symbol so Mom’s friend made it into a necklace for me. It is hand engraved, and says “First of its kind.” It is really special.
Mom and Dad have one now too. One day I hope to look across the room and see someone else wearing one. I want the denim ribbon to be as popular as the “pink ribbon”
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Hi. I’m Meghan.
I am really excited to be Guest Blogger. Life with Cowden’s is hard. I try to focus on all I can do, and like to do – especially swimming and reading. I’m an (almost) 10 year old. I wanted a normal life, but really when I think about it my life is the only one I know. Even with its cons I’m happy with it. Cowden’s Syndrome is a real pain,but its brought out the best in me. People need to be aware of these diseases. It feels great when someone understands you a tries to lend a hand.
Thanks For Reading!
Love,
Meghan
beatingcowdens 
Meghan, you are wise beyond your years. I find your story truly inspiring. Your positive spirit is contagious!
I can definitely say Meghan is a very good friend, even if we have never talked face to face before. She always has something to laugh about when I talk to her. Our friendship started when I told my Mom, “I seriously need to find a kid that I can talk to about Cowden’s.” So started an email penpal-ship. We started facetiming when I said in an email that I wanted to get to know her more and I asked if she had an ipod/pad. When she gave me her address I flew upstairs, grabbed my itouch and called her. We talked for 2 HOURS!!! I can tell this friendship will last and hopefully someday we will get to see each other in real time.
Well I know how you feel,because when I was born with the Cowdens Sydrome. Iam 36 and been fighting with still today. I have a 15 year old son he was also born with it. Meghan you are very bright and strong wonderful girl and keep up the strength. I do let this bring me down but I have them good days. Like I told my son dont let this take you down. I wish you The best and Iam always here for you. Here my email and phone you can text or email– crazymomma7670@yahoo.com and phone 586-746-5747.Hugs to you
Great job Meghan! I hope you get to meet your friends face to face someday!! Your family must really be proud of you!!
Thank you!
Hi Meghan: I’m Heather and I have Cowden’s Syndrome too. I also have LDD which is a rare benign brain tumor which was how I was diagnosed with Cowden’s Syndrome. I read your post and think it’s fabulous. I’m going to share it on my blog too. But I wanted to ask you – what is a Rainbow Loom?
Have a great night.
Your friend,
–Heather
Thank you Heather, and thanks for sharing it too. A Rainbow Loom is something I use to make rubber band jewelry. Try to look it up on google. Its fun!
Meghan
Thankyou for being there for all of us. U make r lifes so much easier
Sent from Samsung tabletbeatingcowdens wrote:
Thanks for making me feel good!
Good job Meghan! I shared your post on my facebook page saying: A very special young lady who has also Cowden’s syndrom. She is wise, strong and a model to me! 🙂
My problems with this PTEN mutation started when I was 8. I am now 29 and was diagnosed only 4 years ago. I was told for a long time by doctors I was just trying to get attention. I know that when you become a genecist, you will help so many people get a diagnosis earlier and be able to understand better their own body. You’re great, I wish you all the best 🙂
Funny…I felt that way a lot too, before my diagnosis. 😦
That is so nice! I really hope to help other people with rare diseases. It really stinks when no one knows what you are talking about – or feeling!
way to go Meghan,you did a great blog!….never lose sight of your dreams and keep on fighting the good fight…one day i’m sure we’ll be reading about your accomplishments…xo
Thank you! 🙂
Meghan, I think you are amazing. You will make a remarkable difference in this world. You’ve already made a difference in mine with this blog post. I’m 36 and have only known I had Cowden’s for 6 years (though I did have a lot of the physical problems related to it before of course). I have two children—a son who is 9 just like you named Owen and an 8 year old daughter named Hannah. They inherited Cowden’s from me. It’s impossible for me to understand how they view having it and neither one wants to discuss it with me too much. Your answers have given me some insight into how they may be thinking. I thank you for that! I wish the world for you kiddo.
Thanks. Maybe if your kids Email they might want to Email with me? You could always ask my mom.
Hi Meghan! You are a very inspiring young girl. I’m 45 and I have Cowden’s too. My boys (13 and 8) both have it. I was teased my whole life about having a big head.
Thanks so much. My head is pretty big, but moms is too – so everyone thinks its normal for us. Hopefully you and your boys are healthy.
Meghan,
Our daughter has a pten mutation too. She has the BRRS version but with similar risks. I’m so proud of you. I pray that our daughter will look at life the way you do when she gets older. I love the necklace and I would love to get two of them. Can your mom’s friend make and sell them??? Good luck!
I am sorry it took so long to see this. My Mom is working with Global Genes project to try and get them to sell them. Maybe you want to contact them. Our most recent Email about it was with Andrea Epstein at GGP. She was lovely.