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RE: Daily Dose of Sultnpapper 08/13/18> I remember it like it was yesterday…08/13/04.
I've never heard of EDS, must be quite a concern for your family to have it! It's strange that the blood thinning meds does the opposite! I look forward to reading more about it Mr Papper.
Dates like these are always sad, thinking of you and your family!
It is quite concerning for sure, in the kids right now the primary issue is bones that go in and out of place for no reason at all. Well, there is a reason, they have EDS, one of the many complications is that their muscle tissue doesn't stick to their bones and so there really isn't a lot of support around the joints.
There are some days that you could never tell there is anything wrong with them and there are other days when Shortie needs a cane just to be able to walk to the bathroom because her knees and ankles give out so much.
Braces do help some but they are just very uncomfortable to say the least.
When Shortie describes her condition to people she says,"you know how you have glue that holds your muscle's to your bones, right, well the glue I got when I was born was defective."
I wish I could get my wife to write about it, she has it and deals with it first hand and she also has to help the kids learn to deal with it. I am going to work on her to write it and I'll throw my two cents worth on top of it.
There are people who have it that literally cannot get out of bed and that are on feeding tubes, it can be that severe.
We can only hope that the Baylor College of Medicine study that is currently ongoing will help shed some light on it and as a family we are all involved in that study except Blondie, she refused to have her blood drawn that day for anything.
Gosh mr Papper, so it can be a real debilitating condition, Shorty's description is very good!
I checked now and saw there's an EDS Society as well.
Really hope your family do not have severe complications as a result; would be good to hear about this condition from mrs Papper's point of view!
There certainly is an EDS Society and it is a good source of information. It seems like it is a progressive type of condition that gets worse over time. My wife had the same symptoms as a child as the kids do but back when she was a kid people would always accuse her of "faking" that she was ill to get out of doing stuff and going to school.
Her pediatrician and then family doctors new something was wrong but could never put a handle on it. It has a long history dating way back but because it affected so few people it was not widely know and not heavily pursued in terms of research. Things have changed and there is more and more research being done but no cure has been discovered so it mainly revolves right now on symptom / pain management .
I gave seen with my own eyes though that it is getting progressively worse with my wife in the 26 years since we met. So when she says the the kids are going through the exact same things that she did as a child that is scary on what they have to look forward too unless something changes.
That must be a huge concern for both of you, especially Mrs Papper as she knows exactly what it feeks like! Gosh, and then I complain about a little hayfever!
It surely is.