My name is Liz and I have 2 boys with EDS. My oldest with EDS is 22 and he also has Osteo Genesis Imperfects, my youngest son with EDS is 17.
We just moved to the San Antonio area on May 13th from Denver, Colorado. My oldest son has had some complications and we are working through them. My younger son has watched what his brother has gone through so he limits what he does in fear of having to go through what his brother does. I have explained that everyone is different, yet this falls on deaf ears many times!
I am struggling with finding an Ortho for my oldest son. We found an amazing PCP whom referred us to UT Health Ortho and went to our first appointment last week. Upon arrival we were told that they could not see him because his case is too complex!! So, his PCP is currently looking for an Ortho as my son keeps dislocating his kneecap. Other than that we are just trying to acclimate to this heat and humidity!!
I would love to hear others journeys and recommendations for specialists in the San Antonio are. I look forward to corresponding with others going through this journey.
Mu username is Eawicks.