Leaflet Academy



Jacob's update

3:20 PM, Jan. 17, 2009 .. 0 comments .. Link
Total hospitals visited to date:  4
X-rays: 5
Ultrasounds: 2

I have been researching Pierre Robin syndrome, and it seems to be closely linked to Stickler syndrome.  I know think that Stickler syndrome is a possibility because when I was away visiting family I asked a lot of questions, and it turns out that there are a lot of the conditions in Stickler syndrome throughout my paternal grandmother's family, including scoliosis and myopia.  So when I go to Jake's next hospital appointment on Monday I am going to have to ask to see a genetic counsellor.

When will all this end?  Where will it end?  Will I be the person to tell the people in my family that some of them have a syndrome that they've never heard of?  Fun stuff...

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