Imagine discovering that you or a loved one has a life threatening heart condition. At the initial diagnosis you would be confused and scared and probably devastated. But you, like most of us, wouldn’t throw in the towel, because human beings are extremely resilient. We don’t give up when faced with a challenge. We fight. We learn. We grow. So if you found out you had Marfan Syndrome you would find that there are treatments, knowledgable doctors, and an amazing community. You would find others who have this disorder and you would begin to learn how to live a healthy and productive life. Yes, you will have to take medicine, get regular checkups and maybe even have to have surgery. It doesn’t sound all that fun.
Now, imagine the alternative. Imagine not knowing that you had a heart condition until it was too late. Out of the blue you are hit with an intense pain in your chest, or your vision goes dark, or your lung collapses. It would be incredibly scary. And it could also be prevented! That’s the good news.
Knowing that you have Marfan Syndrome, just simply having a diagnosis, will increase your life expectancy, and quality of life greatly. Often you will have the same life expectancy as the typical American. There is medicine you can take, surgeries you can have, and doctors you can talk to and learn from and have an amazing and wonderful life. You will cry. You will fight. You will fall down. You won’t give up. You will be inspired and inspire others.
Marfan Syndrome is a complex disorder and can manifest itself in many different ways.
Here are some of the physical signs:
- Long arms, legs and fingers
- Tall and thin body type
- Curved spine
- Chest sinks in or sticks out
- Flexible joints
- Flat feet
- Crowded teeth
- Stretch marks on the skin that are not related to weight gain or loss
I have every single one of these signs. I was diagnosed when I was 2 years old. My mom had to fight to get the diagnosis so we could begin treatment, but once we had the diagnosis, life became so much easier. My parents had a plan of attack. They new a little better what to expect and it was a lot less scary. Getting a diagnosis is becoming easier as there is more awareness, but we are far from done!
These are the surgeries I have had throughout my life. (So far.)
I had foot surgery at the age of 2. I was in a wheelchair for several months, and had to wear casts then leg braces for over a year.
I had open heart surgery and aortic valve replacement in 4th grade. I was 9 years old. I bounced back pretty quick but was told I would have to have my blood drawn every 2 to 4 weeks for the rest of my life to test my Coumadin levels. I remember screaming that I wanted to die while in the hospital bed, because being poked with needles at that age, and being told that it would become a regular part of your life, really did seem like the worst possible scenario. I’ve since become accustomed to needles and no longer cry before, after, or during, but I ALWAYS get my sticker. 🙂
At the age of 19, and during my sophomore year in college, I had to have back surgery to fuse my spine together and insert titanium rods to straighten my back out. The surgery caught me off guard. I had planned to study abroad in Australia for a semester but had to call that off. It would be an extremely painful recovery, one that takes 2 full years to get back to your old self. I grew about 2 inches after the surgery, and luckily for now, only have occasional back and neck pain.
At the age of 23 the lens in my right eye detached and fell forward on to my cornea. My vision suddenly went blurry. I had been told to go to hospital immediately if something sudden changes with my vision so I did just that. In less then 24 hours I went in for emergency surgery and had the lens removed from my eye. It took several months to recover, but now my vision in the right eye is better than it has ever been. I just have to wear a contact every day. I can no longer wear glasses, which is a little frustrating, but having my vision is important enough that I don’t get too upset.
Those are the surgeries I have had so far, relating to my Marfan Syndrome. I’m not telling you all this so that you feel bad for me. I’m telling you so you are proud of how far I have come, and acknowledge how fortunate we are that such treatments and surgeries even exist. Without my diagnosis, I probably wouldn’t be alive today.
All of these life saving surgeries, medicines and treatments wouldn’t be possible without research and scientific discovery and none of this would be possible, without donations from people like you.
The goal is simple. We want to spread awareness, raise money, and save lives. If we can educate each other, and educate health professionals, and fund more research, we can make a tangible and noticeable difference. 1 in 5,000 people has Marfan Syndrome. But 1 in 10,000 people doesn’t know that they have it.
There is great need for more fundraising, and I am honored to be a part of the Walk for Victory in Pasadena on May 21st
Thank you for reading this, and thank you for supporting my walk for victory! Every donation will be cherished. If you can help in any way I am extremely grateful.
To sponsor ANDY ERIKSON AND THE UNICORNS – WALK FOR VICTORY – GO HERE!
For more inform about Marfan Syndrome visit —> http://www.marfan.org/about/marfan
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