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Introduction - Elhers Danlos Syndrome (EDS)

Hi, I'm Enna.
I have Elhers Danlos Syndrome (EDS).
It is not that we'll known and even doctors, nurses etc don't always know what it is. I've been a wheelchair user for over a decade. I have 6 kids, by God's Grace, three are from my husband's first marriage and three are my birth-kids, one of whom is with God as he came too early to survive due to the high levels of elastaine caused by EDS. My youngest child also came early but by God's Grace he's 3 months old now and thriving. We pray he grows up healthy and happy God-Willing.
I'm looking forward to interacting and connecting with everyone here. I hope we all get on
I have Elhers Danlos Syndrome (EDS).
It is not that we'll known and even doctors, nurses etc don't always know what it is. I've been a wheelchair user for over a decade. I have 6 kids, by God's Grace, three are from my husband's first marriage and three are my birth-kids, one of whom is with God as he came too early to survive due to the high levels of elastaine caused by EDS. My youngest child also came early but by God's Grace he's 3 months old now and thriving. We pray he grows up healthy and happy God-Willing.
I'm looking forward to interacting and connecting with everyone here. I hope we all get on

Replies
Welcome to our online community !!!!
It's great to meet you, I look forward to meeting/chatting to you ???
Please please have a good look around & let me know if I can help in anyway.
Senior online community officer
I'm so glad that there are others like me on the forum!! Yey!
F xxx
The blood tests are usually done when it can be caused by a genetic thing.These are often carried out by the genetics team at St Georges to identify if you are affected as different disorders have not only different traits but different genetic mutations.
My son has Marfan Syndrome and I too carry the gene but am not as severely affected by it as he is.
His life was actually saved by another parent who we met at RNOH Stanmore while undergoing spinal surgery.We knew it was something more than scoliosis which was his first diagnosis but she told us to get his heart checked out due to similar facial features/weight issues to her daughter and it sort of snowballed from there!