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Nannette

offline 11 friends
1 photo in album
joined on 10/15/06
last updated 09/11/07
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My Friends

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It's all about my son Nathan

Gender
Female
Age
32
Location
Utah
about me
Hi I am Nannette. I am the mother to two wonderful and handsome boys. Jake is 8 and Nathan is 6. Nathan being my baby has been diagnosed with CED (Camurati-Engelmann's Disease or Progressive Diaphyseal Dysplasia). I am so grateful to this tribe for all the great friends I have met here and all the help and support they have given me. I have met some of the greatest and strongest people and I know I have made some of the best life-long frineds. They give me such great comfort. I would love to share what I have learned and always love to hear what others have gone through and learned with CED.
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My Recent Activity

In the beginning... (blog entry) My youngest son Nathan was diagnosed with Camurati-Engelmann's Disease (CED) in March of 2005. (3 1/2 years old) The diagnosis came very slowly. We had visited our pediatrician several times with concerns like him not eating, waking up several tim... read more
blog entry posted Tue, September 11, 2007 - 9:22 PM permalink - 1 comment
Nathan's Genetic Testing results have come back! (blog entry) We found out the information from our rheumatologist yesterday!
Dr. Wim van Hul's results agree with the diagnosis of Camurati-Engelmann's Disease.
He also states that it is not Genetic but in fact a mutation in his gene TGFB1.

Thought you wo... read more
blog entry posted Fri, March 2, 2007 - 1:15 PM permalink - 0 comments
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My Blog

In the beginning...
My youngest son Nathan was diagnosed with Camurati-Engelmann's Disease (CED) in March of 2005. (3 1/2 years old) The diagnosis came very slowly. We had visited our pediatrician several times with concerns like him not eating, waking up several times a night almost every night screaming, running slowly with difficulty with stairs and sleeping like crazy. The answer was always nightmares and he will grow out of it. Until we made him watch Nathan run up the clinic hallways. That triggered the mu... read more
Tue, September 11, 2007 - 9:22 PM permalink - 1 comment
 
Nathan's Genetic Testing results have come back!
We found out the information from our rheumatologist yesterday!
Dr. Wim van Hul's results agree with the diagnosis of Camurati-Engelmann's Disease.
He also states that it is not Genetic but in fact a mutation in his gene TGFB1.

Thought you would all like to know the news.
Thanks,
Nan
Fri, March 2, 2007 - 1:15 PM permalink - 0 comments
 
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