homeschoolmomof4
Keep moving forward
- Joined
- Dec 25, 2006
Hi!
Another EDS family here. We got our diagnoses in a backward manner. My daughter and I were both seeing an incredible PT and she was the one who put the pieces together and thought that we had EDS. She recommended a rheumy for my DD(because she was worse off at the time) who farmed DD out to many specialists in an attempt to make sure we got an accurate diagnosis. With all our reports in hand, DD was diagnosed with EDS3 at Children's in DC and, because of our family history, the geneticist suggested that my mother, myself and now deceased grandmother all had it as well. All my doctors(and it seems there are a ton of them) and all my mother's doctors(a boatload for her as well) all operate under the assumption that we have EDS3, based on our symptoms and my daughter's diagnosis. For insurance purposes, my mother and I have not and probably will not get a formal diagnosis unless it becomes absolutely necessary. None of my boys appear to have EDS. In our family, it has only been the females that have been symptomatic with our symptoms becoming much more evident at puberty. The miscarriage rate in the family has been quite high. My grandmother had at least 10 miscarriages and two preemies. After many miscarriages, my mother was only able to have me. I was able to have 4 children, but they were all early as a result of PROM. The amniotic sac is apparently made of collagen fibers so ours is pretty common story. DD is probably the most symptomatic of the 4 generations and has decided that she will adopt children someday as she doesn't want to pass on this condition and she's not even sure she would be able to carry to term. Now, enough of the bummer diagnosis information! Moving on to some fun stuff! ![good vibes :goodvibes :goodvibes](http://www.wdwinfo.com/images/smilies/goodvibes.gif)
My mother, daughter and I will be going to Disney World this coming January so it should be an EDS Princess Adventure!
We're all three huge Disney fans so it should be a fantastic girls only trip! Because all three of us have EDS, it will be a different type of trip than others we've had with the boys. We are looking forward to lots of Princess meet and greets, Princess character meals and wearing princess tiaras! We're also planning on doing the Wishes Dessert Party to avoid the masses and Sparkling Illuminations Party as well to avoid getting run over as well. The tallest of us is just over 5 feet tall and I'm not even 5 feet tall so we always run the risk of getting run over so we've decided these dessert type parties might be a good thing for us! LOL!
![wave :wave2: :wave2:](http://www.wdwinfo.com/images/smilies/wave.gif)
![good vibes :goodvibes :goodvibes](http://www.wdwinfo.com/images/smilies/goodvibes.gif)
My mother, daughter and I will be going to Disney World this coming January so it should be an EDS Princess Adventure!
![princess princess: princess:](http://www.wdwinfo.com/images/smilies/princess.gif)