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kraftiekortie
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15 Feb 2016, 3:58 pm

I'm actually pretty stiff, rather than hypermobile.



probly.an.aspie
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15 Feb 2016, 4:09 pm

I have never heard of this connection. My skin tends to be quite soft and elastic, and I have pretty flexible joints; but not to the degree of EDS that I am aware of.

One of my best friends has vascular type EDS, and I have often suspected she has aspergers due to the way she relates socially. Before either of us knew anything about aspergers or autism, we would joke that we had the same brain.

She is getting to the point where, due to the weakness of the connective tissues, bones are collapsing on internal organs and cannot be surgically repaired, also bleeding from smaller vessels internally. Sadly, vascular type EDS folks do not have a long life expectancy; and because of the severity of her symptoms, she probably does not have much longer. I am going to miss her so much. I don't have many people with whom I share a brain. :(


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15 Feb 2016, 6:30 pm

probly.an.aspie wrote:
I have never heard of this connection. My skin tends to be quite soft and elastic, and I have pretty flexible joints; but not to the degree of EDS that I am aware of.

One of my best friends has vascular type EDS, and I have often suspected she has aspergers due to the way she relates socially. Before either of us knew anything about aspergers or autism, we would joke that we had the same brain.

She is getting to the point where, due to the weakness of the connective tissues, bones are collapsing on internal organs and cannot be surgically repaired, also bleeding from smaller vessels internally. Sadly, vascular type EDS folks do not have a long life expectancy; and because of the severity of her symptoms, she probably does not have much longer. I am going to miss her so much. I don't have many people with whom I share a brain. :(


Sorry to hear that :( . Vascular EDS sounds terrible. I'm glad that my only symptoms (that I know of) are overly flexible joints. It really hasn't caused me any harm that I have noticed.



probly.an.aspie
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15 Feb 2016, 7:23 pm

Yigeren wrote:
probly.an.aspie wrote:
I have never heard of this connection. My skin tends to be quite soft and elastic, and I have pretty flexible joints; but not to the degree of EDS that I am aware of.

One of my best friends has vascular type EDS, and I have often suspected she has aspergers due to the way she relates socially. Before either of us knew anything about aspergers or autism, we would joke that we had the same brain.

She is getting to the point where, due to the weakness of the connective tissues, bones are collapsing on internal organs and cannot be surgically repaired, also bleeding from smaller vessels internally. Sadly, vascular type EDS folks do not have a long life expectancy; and because of the severity of her symptoms, she probably does not have much longer. I am going to miss her so much. I don't have many people with whom I share a brain. :(


Sorry to hear that :( . Vascular EDS sounds terrible. I'm glad that my only symptoms (that I know of) are overly flexible joints. It really hasn't caused me any harm that I have noticed.


Thank you for your kind words. It is really hard. She has so much pain. Here is a short article on vascular type EDS; highlights why it is the most severe. I am glad that yours does not cause you a lot of difficulty.

http://www.ednf.org/vascular-type


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
-Ed Bruce


AuroraBorealisGazer
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15 Feb 2016, 7:37 pm

probly.an.aspie wrote:

Thank you for your kind words. It is really hard. She has so much pain. Here is a short article on vascular type EDS; highlights why it is the most severe. I am glad that yours does not cause you a lot of difficulty.

http://www.ednf.org/vascular-type



Thank you for helping to spread awareness for EDS.



probly.an.aspie
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15 Feb 2016, 8:36 pm

AuroraBorealisGazer wrote:
probly.an.aspie wrote:

Thank you for your kind words. It is really hard. She has so much pain. Here is a short article on vascular type EDS; highlights why it is the most severe. I am glad that yours does not cause you a lot of difficulty.

http://www.ednf.org/vascular-type



Thank you for helping to spread awareness for EDS.


I wish awareness translated into more help for those suffering from the painful aspects of it. Especially where there is no cure and care is mostly palliative, at least at the point where my friend is. I must admit, i don't know a lot about EDS except for what I know from her.


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
-Ed Bruce


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15 Feb 2016, 8:45 pm

probly.an.aspie wrote:
AuroraBorealisGazer wrote:
probly.an.aspie wrote:

Thank you for your kind words. It is really hard. She has so much pain. Here is a short article on vascular type EDS; highlights why it is the most severe. I am glad that yours does not cause you a lot of difficulty.

http://www.ednf.org/vascular-type



Thank you for helping to spread awareness for EDS.


I wish awareness translated into more help for those suffering from the painful aspects of it. Especially where there is no cure and care is mostly palliative, at least at the point where my friend is. I must admit, i don't know a lot about EDS except for what I know from her.


Yes, my body would like if it translated into a treatment too. But for now, awareness means reaching more doctors and medical professionals, since most don't know what to do with us. It also means that if we can get to the point where EDS is as well known as things like MS or Lupus, there might eventually be a push for more research (which could lead to breakthroughs).



probly.an.aspie
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15 Feb 2016, 8:53 pm

[quote="AuroraBorealisGazer

Yes, my body would like if it translated into a treatment too. But for now, awareness means reaching more doctors and medical professionals, since most don't know what to do with us. It also means that if we can get to the point where EDS is as well known as things like MS or Lupus, there might eventually be a push for more research (which could lead to breakthroughs).[/quote]

Do you have EDS? Do you mind giving more details? I would be interested to hear--as I said, I only know what my friend's experience has been and hers is a severe case.


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
-Ed Bruce


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15 Feb 2016, 10:05 pm

probly.an.aspie wrote:

Do you have EDS? Do you mind giving more details? I would be interested to hear--as I said, I only know what my friend's experience has been and hers is a severe case.


Yes, I do. What details would you like? I'm not sure how my severity would compare to your friend's, but ask away.



probly.an.aspie
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16 Feb 2016, 5:06 am

I was wondering what type you have; how it affects your life; what your prognosis is. Have you needed surgery for it? In my friend's case, she had back surgery at a young age due to spinal issues, and abdominal surgery in her mid 30's for a complete hysterectomy due to bleeding and pain. When the dr did the hysterectomy, he also found blood vessels tangled in her bowel that were bleeding and causing all kinds of problems.

Even on a good day she lives with pain. All the time.

Just wondered what general things you have to say about EDS--as I said, I don't know anyone else who has it, at least not that I know of.


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
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AlexWelshman
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16 Feb 2016, 9:19 am

My 17-year old sister has both Ehlers-Danlos syndrome and autism as well as Dyspraxia.



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16 Feb 2016, 5:29 pm

^ My geneticist didn't conclude which type I have (he's not one of the EDS experts, of which there are very few), but based on the characteristics of each type, I'd guess either type 3 or type 4 (I have very translucent skin/iffy on facial features). I've been fortunate to only need two very minor, commonplace surgeries prior to diagnosis (both of which I had bad reactions to) and post diagnosis my orthopedist is smart enough to know not to operate on my joints.
*For reference, I'm in my 20s.*
It affects me greatly, unfortunately. Like your friend, pain is a daily thing. If I were to go off the pain scale (that doctors seem to rely on so heavily) I'd say a really good pain day for me is at a 5. Most of my joints dislocate and sublux, and it's typically a daily occurrence. Luckily without even realizing it, I've gotten pretty good at putting them back into place, so I haven't had to seek medical assistance in that regard.
I also have a lot of the comorbidities that many EDSers carry, which add to the problem.



probly.an.aspie
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19 Feb 2016, 7:23 am

AuroraBorealisGazer wrote:
^ My geneticist didn't conclude which type I have (he's not one of the EDS experts, of which there are very few), but based on the characteristics of each type, I'd guess either type 3 or type 4 (I have very translucent skin/iffy on facial features). I've been fortunate to only need two very minor, commonplace surgeries prior to diagnosis (both of which I had bad reactions to) and post diagnosis my orthopedist is smart enough to know not to operate on my joints.
*For reference, I'm in my 20s.*
It affects me greatly, unfortunately. Like your friend, pain is a daily thing. If I were to go off the pain scale (that doctors seem to rely on so heavily) I'd say a really good pain day for me is at a 5. Most of my joints dislocate and sublux, and it's typically a daily occurrence. Luckily without even realizing it, I've gotten pretty good at putting them back into place, so I haven't had to seek medical assistance in that regard.
I also have a lot of the comorbidities that many EDSers carry, which add to the problem.


I saw this earlier but forgot to respond at the time. Thanks for a few details. From what I have read, it seems like with some people, it can be hard to figure out what type they have as the types overlap sometimes. I recently found out that there is an EDS research department in Baltimore at Johns Hopkins. I don't know if that is something you would find helpful. I had found the link for my friend; if you can't find it and want it, let me know and i'll look it up for you. As advanced as her case is, it was questionable as to whether they could help her or not. But Hopkins has an excellent reputation, from what I understand. In both treatment and research.


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
-Ed Bruce


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19 Feb 2016, 12:26 pm

Yes, I have considered making the trip up to Baltimore to see Dr. Francamono in her new EDS center. There's also Dr. Tinkle in Chicago (they are the two big experts on EDS, whom I referenced in a previous comment). They both have a very long waiting list; for Dr. F it's about a 1.5-2 year wait last I heard. One of them would be able to determine which type I have.

If your friend hasn't done so already, there is an online EDS group at Inspire.com (the EDNF site links directly to the forum) that she can join. The people there are very knowledgeable and have good suggestions.



probly.an.aspie
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19 Feb 2016, 10:19 pm

AuroraBorealisGazer wrote:
Yes, I have considered making the trip up to Baltimore to see Dr. Francamono in her new EDS center. There's also Dr. Tinkle in Chicago (they are the two big experts on EDS, whom I referenced in a previous comment). They both have a very long waiting list; for Dr. F it's about a 1.5-2 year wait last I heard. One of them would be able to determine which type I have.

If your friend hasn't done so already, there is an online EDS group at Inspire.com (the EDNF site links directly to the forum) that she can join. The people there are very knowledgeable and have good suggestions.


Thank you! i don't know if she is aware of the inspire.com group, so that is good to know.


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"Them that don't know him don't like him,
and them that do sometimes don't know how to take him;
He ain't wrong, he's just different,
and his pride won't let him
do things to make you think he's right."
-Ed Bruce


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22 Dec 2016, 10:17 am

I have Ehlers-Danlos. Mine has progressed to needing to leave a job I love, as I can no longer work. I own a power wheelchair and have spent months in it, but I can currently walk. I had a stroke at 33 and I'm currently seeking diagnosis and treatment for Mast Cell Activation Syndrome (a common co-morbid condition with EDS).

I've been hospitalized for malnutrition and been on elemental diets. About 2 months ago, I was hospitalized and scheduled for a port to be placed to receive TPN (IV nutrition). The doctor tried a "Hail Mary" and got me eating some foods again while taking vast quantities of antihistamines. ...but, that is no longer working and this week I haven't been able to eat *anything* without needing a rescue epipen.

I have a GI specialist at Northwestern who I will see in mid January. I'm hoping she will have some solutions for me.


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well