Thursday, February 4, 2010

February is for Hearts

Typically, when people think of February, they think of Valentine's Day. When they think of Valentine's Day, they think of hearts. So I guess it's no coincidence that February is National Marfan Awareness Month.

Marfan syndrome is a connective tissue disorder that affects the body in many different ways. The three main areas of the body that can be affected by Marfan syndrome are the heart, eyes and skeletal system. It is a genetic disorder than has a 50% chance of being passed down from the parent to the child.

Todd was diagnosed with Marfan syndrome as a child. Both Katie and Michael also have it. This is the reason that we have to go to so many doctor's appointments. Knowing that you have Marfan's and being monitored by physicians is the best way to stay on top of the disorder.

Since I don't have Marfan's, this entire process has been a learning experience for me. And I continue to learn more about it each day as Todd, Michael and Katie face new challenges. I have never blogged about Marfan's before because I wasn't really sure that it was my story to tell. As Todd pointed out, our children have Marfan's, which makes it my story as well. So I hope to be able to blog about doctor's appointments, developments in research and things that occur in Todd, Michael and Katie's lives that pertain to Marfan's syndrome. It will also give me a record to look back on as to when certain aspects of the disorder manifested themselves.

Throughout the month of February, I will blog about when Michael and Katie were diagnosed with Marfan's, as well as what they have already went through relating to Marfan syndrome. Marfan syndrome does not define who they are but it is definitely a part of their everyday lives.

7 comments:

Maya said...

What a great way to celebrate Have a Heart Month!!! I have Marfan (and a 1 yr old son) & came across your blog via Google Alerts. Sharing your family's story is a great way to raise awareness :-) Anyway, I love meeting other people with Marfan, so it was fun to come across your blog! I blog about Marfan over at http://marfmom.wordpress.com. And I don't know how involved you are with the NMF, but there's a social networking site they came up with last year called NMF Connect: http://nmfconnect.marfan.org. I've found it a great way to connect with other people in the same boat!

~ Maya

Steph said...

I had not heard of this before, so I am looking forward to learning this month.

LauraC said...

I am looking forward to learning more and then I am also freaking out bc a lot of the symptoms apply to Jon! But I guess it would apply to any tall skinny person. How did Todd find out he had it (or can you answer that this month).

And yes we should meet!! Come visit!

Carrie77 said...

Oh wow I cannot wait to hear more about this... my husband has type 1 diabetes, which is common, but it has affected our lives and he is always at the doctor. I always worry it'll be passed down to Autumn or Nathan but that is in Gods hands. Anyway, thanks for sharing this with your blog family! :)

Jessica and Jason said...

Karen, I think it's so wonderful you're going to blog about this! It will really be special to have you share about the processes and progress of dealing with this syndrome that, as you so fabulously put it, does have to be dealt with but does not define who your children are. Great job!

Joanna said...

I'm glad to see that you did decide to blog about this and I look forward to reading your future posts.

beautifulyou said...

I would love to get into contact with you and discuss more about Marfan's. My husband is 29 and is facing open heart surgery b/c of an enlarged aortic root. The dr's suspect Marfan's to be the cause of the heart problem. This is all new to us as he hasn't been officially diagnosed. We have a 15month old son that we are worried about having it as well. I would LOVE any infor and advice you can offer!! Thanks so much.