Kay Was Diagnosed With Eds This Past Week

[k'smom]

I should have just went with ChristieD's ideas long ago when she first mentioned this to me, lol. Thanks Christie!

We finally saw the geneticist last Monday. He knows that Kay does have EDS and is waiting on genetic tests to come back. He doesn't know for sure if its Type 111 or classic. He said that the tests he performed are only 50% accurate, but that we should see what comes up anyway.

When this all first started with Kay and the doctors said, "We think she has dysautonomia, but just can't prove it right now", I found this site and started talking to ya'll. Without ya'll, we most likely would not be where we are right now. I have been provided the questions to ask and the direction I lacked through experiences of members here who took the time and patience with me to help me understand and learn. Thank ya'll so much for that!

The geneticist told me that her POTS, pain, digestional problems, vision problems, joint dislocations, ect., can all be explained by the EDS diagnosis. So, I'm wondering if you have any new advice for me after receiving this new diagnosis. I have been reading on the EDS site and trying to absorb everything I can. We are currently in the second round of battle with SSI and hopefully this new diagnosis will help shed some light for the people that make those decisions.

Kay has become very depressed. All the many doctors appts are taking the toll on her. She says it seems like everytime she goes now, it seems as if her life gets worse. I keep telling her that now that they have finally began to nail it all down, so to speak, that we can become better equipped to help her deal with it all. I believe knowledge is power!

[Guest tearose]

I am sorry Kay is so wiped out but it is certainly understandable.

She has endured, I am sure, hundreds of tests and questions and still all she has is "perhaps it is this and perhaps this will help".

To survive, once in awhile it is good to take a break from all the doctors and tests and try to just go on living with what you have.

It is a balance we must find.

Tell her others care and send her support.

best regards,

tearose

[issie]

EDS is usually inherited, so probably someone in the family has it too. There are different degrees of how it affects different people. I have EDS III. This type can't be diagnosed with genetics - it's a visual diagnosis. I had allot of issues with my eyes growing up - I got nearsighted really fast and it progressed really fast. They put hard contacts on me and it helped to hold my eyeballs into place, like a girdle, and it stopped the progression of the digression. I'm not sure how old your daughter is, but if she is having eyes issues and is still growing - this would be a good thing to do and she might not be 1,000 something over 20 in her vision. When I'd finished growing, I went into soft contacts - but the doctors thought it would have been better to stay in the hard ones.

I was the rather stubbly child and always turning my ankle - goes along with. You can do what you set your mind to though. I never let it stop me from attempting whatever I wanted to. I was one that was not very athletic. But, there are some who are very athletic (Chinese gymnasts, contortionist). So, it all depends on the person. Just because one is a certain way - doesn't mean another one will be the same.

There is a certain amount of pain that goes along with this, because of the laxity. Muscle relaxers help me allot. I didn't have to use them until I got in my 20's though and she may not need them at all. I tend to cramp up because of having to hold myself rigid and the muscles fatigue. I have to sleep perfectly straight and have good support for my neck or everything goes out. I've found the tempur pedic pillow to be the best for me. (Tried knockoffs - not the same.) If she is able to exercise and keep her muscles as strong as possible - that will be a good thing. I have a knee that dislocates, and the best thing is to keep everything strong around it - to hold it in place.

Just a few little tidbits. Hope it helps some.