Doctor appointment

Well my husband had another appointment with the gene doctor. They called last week and said he does have Ehlers-Danlos Syndrome. When we saw the doctor he said he did not see why he could not live a long life with care looking at my husbands Mom. My husbands Mom is 69. She out lived her 2 brothers and a sister. My husband can resume a normal life, but certain things he can not do. For one he can not lift weights to try to build up muscles. He can lift weights to keep his strenth up, he can't do a hobby that might hurt him. He will have to wear a medical braclet or necklace to warn of the EDS.
Our daughter with the baby needs to be checked to see if she has it. I'm hoping she does not have it. She does not have the features of having EDS. She has a round face like mine.
We ask about Casey, cause I told the dr, I had noticed Casey's face getting long before he died. We showed him a picture of Casey. He said Casey had EDS. When he looked at his picture he said Casey's chin would have started going in like his Dad's. This is Casey in 2006-2007. The second picture is 2007-2008 they were taken in the fall.


The dr said the narrow bridge in his nose is a feature of the diease. He said his chin would have started going in to. I ask about the arota dissection, because I had read on the EDNF site that EDS does not cause those. The doctor said it does. He said not to take what I read on the internet seriously, cause most people that write on the boards and stuff have really bad syptoms. My husband has went this long without any trouble, so his is not so bad. My husband is 44.
I don't know in a way I wished this had of happened before Casey died, then we could have know to watch for things. But then if Casey had not have died he might at some time go through the things my husband has went through. And Casey would have had trouble with his teeth. I still miss Casey, but I would not have wanted him to have the troubles that EDS causes. He was saved from all that. I love you Casey and am looking forward to seeing you again.