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Mar 18th, 2009
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am an mother of four children. My second child a girl named Angel. She is 10 years old and has been diagnosed with EDS. It was very apparent at birth that there was something different about her. The doctors finally said 5 years ago that she had EDS. She has EDS type III. She is always feeling that she is the only child that has this. But we have never met any other children with it. The doctors said that she probably would not walk, but she did. She runs, and rides a bike. The pain that she lives with everyday, that I will never feel that myself. That makes her my Angel on earth. She lives everyday to the fullest. I'm so proud of her. 
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  | Posted Jul 29th, 2009 at 4:49PM Do any of your other childern have EDS?? or is it just Angel?   |
 | Posted Aug 4th, 2009 at 3:09AM Fair warning she'll have a hard road ahead. I have EDS IV and my best advice is any doctor she needs to see ask them first if they know the condition. If they don't leave the office and find another doctor. I ended up without use of any of my limbs because I trusted a Hack who didn't know the condition, but at the time I didn't know any better. Avoid surgeries if possible, but don't let her get to the point of breaking bones from lack of cartledge since it can lead to soft tissue damage that most times can't be fixed. Lastly explain to her as best you can not to show off her hypermobility because later in life it will cause more poblems than it's worth. I wish you the best of luck, and always let her know how much she means to you even if it means the other children feel slighted. The only reason I'm alive today is because my parents sent away my brother to a gifted school so they could devote their time and love to helping me through everything this condition brings. Life will be hard for her, just make sure she knows she always has someone to come to for a long hug. I'm 26 and live on my own now, but I still come home for those when it gets to be too much. I wish you and her the best of luck in the future, and if stem cell research ever is legalized then there's real hope for a cure I believe, so don't give up hope. If there are joint problems I can reccomend a couple incredible surgeons in Louisiana who gave me back my mobility, and my life, just post a message and I'll respond. I hope this helps some. |
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