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I'm pretty much a homebody. I rarely get active outside my home... unless it involves my children. Rarely do I talk about my family in my blog posts. I may make minor references - usually about my husband since he is just an extension of myself. But every now and then I will talk about my children (especially Pea Pie - my ADD munchkin of 6 and boy oh boy can I rant on about raising an ADD child).
I have two lovely girls. My older daughter has a genetic tissue disorder called Ehlers-Danlos. There are several forms of EDS. The most common is Type III also known as hypermobility. There is a form that affects the skin and a form that is quite dangerous that affects the internal organs, most notably the heart. My daughter has the most common and less severe form. She is extremely flexible. Your connective tissue (collagen is the most recognized name) works through out your body. The best way to describe healthy connective tissue is to imagine spaghetti noodles that have been boiled for just a few minutes, they've softened enough to bend, but bend too far and they'll snap. Stack them together and you have a strong and flexible patch of fibers. Boil those noodles for 10 minutes and you've got a limp pile of fiber strands. That loose pile of fiber strands is a good way to think about the tissue in someone with a connective tissue disorder. My daughter's skin is fragile and tears. Her joints are extremely hypermobile and she already experiences joint pain and discomfort. She also has minor scoliosis. As she grows she'll have to be more careful of her joints and she may be prone to chronic pain.
I am a member of the EDNF Ehlers-Danlos National Foundation and I have decided to attempt to raise funds to help research and treatment. Should you feel in the giving spirit, click on the image of my daughter to go to my EDNF fundraising page. You can also find more information directly from the EDNF at the Ehlers Danlos National Foundation. If you would like more information on connective tissue disorders or Ehlers-Danlos, feel free to contact me. I have a wealth of information and am a support group leader.
Isn't she photogenic?
One of these days... I'll tell you about my adventures in the life of an attention deficient princess.
I have two lovely girls. My older daughter has a genetic tissue disorder called Ehlers-Danlos. There are several forms of EDS. The most common is Type III also known as hypermobility. There is a form that affects the skin and a form that is quite dangerous that affects the internal organs, most notably the heart. My daughter has the most common and less severe form. She is extremely flexible. Your connective tissue (collagen is the most recognized name) works through out your body. The best way to describe healthy connective tissue is to imagine spaghetti noodles that have been boiled for just a few minutes, they've softened enough to bend, but bend too far and they'll snap. Stack them together and you have a strong and flexible patch of fibers. Boil those noodles for 10 minutes and you've got a limp pile of fiber strands. That loose pile of fiber strands is a good way to think about the tissue in someone with a connective tissue disorder. My daughter's skin is fragile and tears. Her joints are extremely hypermobile and she already experiences joint pain and discomfort. She also has minor scoliosis. As she grows she'll have to be more careful of her joints and she may be prone to chronic pain.
I am a member of the EDNF Ehlers-Danlos National Foundation and I have decided to attempt to raise funds to help research and treatment. Should you feel in the giving spirit, click on the image of my daughter to go to my EDNF fundraising page. You can also find more information directly from the EDNF at the Ehlers Danlos National Foundation. If you would like more information on connective tissue disorders or Ehlers-Danlos, feel free to contact me. I have a wealth of information and am a support group leader.
Isn't she photogenic?
One of these days... I'll tell you about my adventures in the life of an attention deficient princess.
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8 Comments:
It's an amazing photo and a sad and amazing story. So many stories, everywhere, under the cover, behind the windowshade, under the skin.
Thank you for sharing it --
here via the randomizer which is still working its goodness.
Thanks Stuntmother. I was just surfing through the randomizer. Now that the nablopomo is over I find myself sitting here wondering what the heck I should be reading! :)
She is a beautiful girl. I love the picture.
That is a lovely photo, and a lovely little girl. Good luck to you and her.
Okay, as someone who's hypermobile and lives with a lot of pain and almost constant orthopedic issues, I totally get where your daughter's coming from. Hang in there and if you need any feedback from this side, holler.
Sorry to hear that Susan. How small the world is. We all have something in common... eventually.
Your daughter is beautiful, Rashenbo. I am so grateful that people like you get involved to try and make things better. Is EDS similar to Marfun's disease? I thought Marfun's also was characterized by CT disorders.
Rashenbo,
Your daughter is absolutely stunning. That is a wonderful photograph. As stuntmother says, there are so layers to our lives, to our stories, even with blogs we only know so much of someone's life. Thank you for sharing a bit of yours.
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