diana allen
My son Alex
My son Alex has symptoms that over lap Loeys-Dietz syndrome, Marfan syndrome and Ehlers-Danlos IV syndrome. But has not got the vascular problems with LDS, but has extra symptoms that do not go with any of the conditions mentioned. The Dr's that deal with my son are very narrow minded and told me Alex's other symptoms are just a red herring and thats that. Which you can imagine is very frustraiting as a very loving parent.
My son Alex
I am trying to put up pictures of my son. So everybody can see him and maybe someone might know what Alex may have.
My son Alex's feet
Alex has strong acrogeria of the extremities. The hands and feet and on his arms and legs
My son Alex's hands
This is not the best picture but his hand are very thin and look the same as his feet
My son Alex's face
Alex has a cleft lip and a bilateral cleft pallet and a split uvula and also wide set eye's
My son Alex's teeth
This is a poor picture as it is hard to take a picture of Alex's mouth as he only has a tiny mouth that dosn't open very wide
My son Alex's teeth
This is a poor picture as it is hard to take a picture of Alex's mouth as he only has a tiny mouth that dosn't open very wide
My son Alex
Alex just wanted me to put up a photo of him smiling. As he did not like his other pictures
I am Diana, Alex's mother
I am suppose to have Ehlers-Danlos IV syndrome. I do belive i might even though my tests did not show i had the condition. My Dr's think i have as they say i look like i have it

