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Ehlers-Danlos Syndrome

kenbobo

By kenbobo
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kenbobo

kenbobo

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This is something I've learned based off of experience- not many people have heard of it.

My sister *has it and I've become as educated and professional about it as I can.

The type my sister has* involves the joints becoming quite mobile, allowing for easy dislocations, hyper extension, sprains, and subluxation.

This is a disease that can make someones life terrible. The sad thing is, next to no one knows what it is.

According to genetics, if she has it, I more than likely** have it too.

This also affects the heart, and skin.

Please, keep my family in your prayers.

-Ken

*more than 99% likely; ** 56/44

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WinkAllKerb''

WinkAllKerb''

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Posted (edited)

because the way most people look at it and them .. dark ... the most sad thing that doesn't help at all ... often ... changing random others people sights is an important "cure" part (notice i personally dislike the word cure in thoose case of life event moslty thinking to a said "autist" friend of mine saying so ... at least most people consider him as autist and sick when i just think he is normal ,and rarely different by occurence and low population representation self mirrored applied and related fear ,and taught me a lot about myself and others at a high cost for him from "my"/some point of view and sometime "his" own but not always for both, time that pass and things evolve always kind of thingies) ...

Edited by WinkAllKerb''
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kenbobo

kenbobo

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Have you spoken with anyone who has this condition, other than your sister? Also, do you know if it is possible for you to be genetically tested to find out for sure if you have it or not?

1. No.

2. I will be tested if she does test positive.

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Captain Vlad

Captain Vlad

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A very, very close friend of mine struggles with this disease. It took forever for her to be diagnosed, because as you said, no one seems to know what the hell it is, especially in the not-exactly-cosmopolitan area of Oklahoma we live in. She seems to do all right, although she had daily issues I'm certainly glad I don't have to deal with.

Prayers and best wishes are offered.

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DarkGravity

DarkGravity

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I watched a TED TALK recently about happiness, and it compared people who won the lottery to people who suddenly became paraplegic. 6 months later, there was no difference in the happiness level of the two groups. Both had returned to baseline. So try not to get too worked up about something that might be. Either way, a good life can be had. Either way, you will always have a personal load of problems that no one else has.

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kenbobo

kenbobo

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I watched a TED TALK recently about happiness, and it compared people who won the lottery to people who suddenly became paraplegic. 6 months later, there was no difference in the happiness level of the two groups. Both had returned to baseline. So try not to get too worked up about something that might be. Either way, a good life can be had. Either way, you will always have a personal load of problems that no one else has.

thanks man

:)

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  • 2 weeks later...
Aanker

Aanker

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Posted

Sounds a bit like Marfan Syndrome.

It's not a great consolation, but we have to try to make the most of our lives regardless of our predicaments. Just based on some superficial experience with working in a hospice, those who seemed to lead the best lives were those who 'seized the day', and sought to find enjoyment from what was available to them. As difficult as it may be, focus on what you and/or your sister can do, and not on the limits of the disability.

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