Tuesday, March 24, 2009


We are very lucky in that we have a good support network within our family and friends! It has been very helpful to have people in our corner and not only giving emotional support but actually doing their own research of Parry Romberg's and trying to understand it and find the cause of it.

Some theories on the cause include... an injury or trauma at birth. (which Hank had). Or maybe the person is pre-disposed to it and it activates after a trauma. There are also studies that show the bacteria found in Lyme Disease is also found in Parry Romberg's and Scleroderma... There are cases of parent and child with it as well, giving it a familial link. I feel like there are so many pieces to this puzzle...we just need to find the right person/people to put it all together!

There are some really great web sites regarding Parry Romberg's, that offer information and support. My favorites are "The Romberg Connection" and "PRS Resource". The Romberg Connection has a Yahoo support group and it is a great way to share information. The PRS Resource has the latest info on treatment, restorative procedures, etc. Both have been helpful to me and through them I have been able to make contact with other parents in our situation as well as adults with PRS.

Click here: Welcome to The Romberg's Connection

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