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Ehlers-Danlos Syndrome Online Support Group

Mom of 2 boys with EDS

#1

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.

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#2

Hello Liz! I haven’t been on this site in some time! It’s nice to meet you.

My best recommendation for, your sons (especially the 17 year old who has seen his older brother go through a lot) is to find support groups on social media where they can talk to others around their own ages and people who have had different experiences and can offer advice and companionship. It makes so much difference and helps you feel so much less alone and is way different to hear things from peers rather than your mom, you know?

I am 28 now and my issues started getting bad at 17. Social media made all of the difference in the world do how I grew up and adapted.

If either of them use discord (an instant messaging forum type service with lots of groups including support groups) I would be happy to give a link to one with people of a lot of varrying ages and experiences that might be able to help.

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#3

Hello. I was diagnosed in 2016. I am 16 years old and have been struggling with this for a while. What has helped me is continuous support from my mom and online forums where I can talk with others who deal with what I have been dealing with. It helps to know that I am not alone in my struggles.

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