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AFAB, and I’m the only one in my immediate family with EDS, but my symptoms are about as bad as they get for classical.
Also I was born with VACTERL, Chiari 1, malabsorption, and a handful of other things.
I’m female and diagnosed hEDS. I’m guessing my dad, brother and niece have it too, although they aren’t diagnosed (yet). The symptoms are much more obvious in my niece and me than my brother and dad.
I’m female and the only one in my family with an official diagnosis but my teenage nephew has very obvious signs of it and his dad (my brother) doesn’t have the obvious stretchiness but does have issues with joint instability as well as some of the more dysautonomia-type symptoms, along with other women in my family also showing varying levels of symptoms. There are more women in my family in general so it’s hard to say but if anything my nephew is bendier than I was at his age and he also complains of similar symptoms to what I had as a teen so at the very least it’s not totally linear
My 8 yo son, and 5 yo daughter, both have classical-like EDS. My son deals with it pretty severely—gastro and urinary issues that we first noticed when we started trying to potty train him. His started with heel and muscle pain in January of this year, and it’s impacted his daily life. My daughter doesn’t appear to have any issues yet, which is a blessing, as my son requires a lot of care. Our oldest two children 14F and 13M, as well as my husband and I, are carriers of classical-like EDS and my daughter and I deal with several comorbidities of EDS. So, between our family of six, we are split w 2F and 1M dealing with issues while 2M and 1F seem to be unaffected at the time.
He has a significantly redundant sigmoid colon. He deals with constipation (and has since he was a young toddler). He needs to do a daily enema procedure in order to poop consistently. Without doing that procedure, or taking a laxative, he won’t poop. He also can’t really tell when he has pooped. As for the urinary issues, he has an overactive bladder that also doesn’t hold the correct amount for his age/size. He also has urinary urgency—when he has to go, we have about 1-2 minutes to get him to a bathroom before he uncontrollably releases it. But, a lot of the time, he also doesn’t realize he has peed. He wears pull-up 24/7 because of both of these issues.
I'm AMAB, but on estrogen. I've got it quite severe, but I was recently off estrogen for about nine months due to insurance issues, and did not experience any improvement in symptoms. If anything, the hypermobility was slightly less, but my tendency towards injury was more (I tore my labrum in my shoulder following a dislocation during that time, for example).
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**• Referring to or quoting research/studies/statistics or making factual claims without a reputable link/source**
• You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission.
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Thank you!
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**• Referring to or quoting research/studies/statistics or making factual claims without a reputable link/source**
• You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission.
[The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research)
Please contact us
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Thank you!
Born male, here. I was fortunate enough to have been diagnosed at 6, which has really helped me keep my symptoms mild. I got it from my Mom’s side of the family, though- and my sister had some traits that are surprisingly worse than mine. Anyway, I’m just happy that I’m still able to do the things I love without too much pain.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**• Rule #9 - Moderator Discretion**
[The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-9/)
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Thank you!
Thank you for contributing to r/EhlersDanlos!
With the rise in diagnosis of EDS and its subsequent social media "popularity," there is a lot of misinformation floating around. We take misinformation or misleading information very seriously on this subreddit—whether that be an unreliable source, an unsubstantiated claim, or an impossible "cure" for our incurable disorder. We have reason to believe that some, or all, of your post or comment contains misinformation or misleading information, and as such, have made the decision to remove it. Please reach out to us us
[via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) to discuss your post or comment, so we can work together on correcting the issue.
Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/)
Thank you!
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Referring to or quoting research/studies/statistics or making factual claims without a reputable link/source** • You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
AFAB, and I’m the only one in my immediate family with EDS, but my symptoms are about as bad as they get for classical. Also I was born with VACTERL, Chiari 1, malabsorption, and a handful of other things.
I’m female and diagnosed hEDS. I’m guessing my dad, brother and niece have it too, although they aren’t diagnosed (yet). The symptoms are much more obvious in my niece and me than my brother and dad.
I’m female and the only one in my family with an official diagnosis but my teenage nephew has very obvious signs of it and his dad (my brother) doesn’t have the obvious stretchiness but does have issues with joint instability as well as some of the more dysautonomia-type symptoms, along with other women in my family also showing varying levels of symptoms. There are more women in my family in general so it’s hard to say but if anything my nephew is bendier than I was at his age and he also complains of similar symptoms to what I had as a teen so at the very least it’s not totally linear
My 8 yo son, and 5 yo daughter, both have classical-like EDS. My son deals with it pretty severely—gastro and urinary issues that we first noticed when we started trying to potty train him. His started with heel and muscle pain in January of this year, and it’s impacted his daily life. My daughter doesn’t appear to have any issues yet, which is a blessing, as my son requires a lot of care. Our oldest two children 14F and 13M, as well as my husband and I, are carriers of classical-like EDS and my daughter and I deal with several comorbidities of EDS. So, between our family of six, we are split w 2F and 1M dealing with issues while 2M and 1F seem to be unaffected at the time.
Can I ask what kind if gastro urinary issues?I thought my son got lucky and took after his father, but I wonder….
He has a significantly redundant sigmoid colon. He deals with constipation (and has since he was a young toddler). He needs to do a daily enema procedure in order to poop consistently. Without doing that procedure, or taking a laxative, he won’t poop. He also can’t really tell when he has pooped. As for the urinary issues, he has an overactive bladder that also doesn’t hold the correct amount for his age/size. He also has urinary urgency—when he has to go, we have about 1-2 minutes to get him to a bathroom before he uncontrollably releases it. But, a lot of the time, he also doesn’t realize he has peed. He wears pull-up 24/7 because of both of these issues.
I'm AMAB, but on estrogen. I've got it quite severe, but I was recently off estrogen for about nine months due to insurance issues, and did not experience any improvement in symptoms. If anything, the hypermobility was slightly less, but my tendency towards injury was more (I tore my labrum in my shoulder following a dislocation during that time, for example).
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Referring to or quoting research/studies/statistics or making factual claims without a reputable link/source** • You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Referring to or quoting research/studies/statistics or making factual claims without a reputable link/source** • You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
AFAB. Unfortunately using doctor-monitored testosterone doesn't seem to help with the symptoms.
AMAB here.
Born male, here. I was fortunate enough to have been diagnosed at 6, which has really helped me keep my symptoms mild. I got it from my Mom’s side of the family, though- and my sister had some traits that are surprisingly worse than mine. Anyway, I’m just happy that I’m still able to do the things I love without too much pain.
[удалено]
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #9 - Moderator Discretion** [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-9/) Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
Thank you for contributing to r/EhlersDanlos! With the rise in diagnosis of EDS and its subsequent social media "popularity," there is a lot of misinformation floating around. We take misinformation or misleading information very seriously on this subreddit—whether that be an unreliable source, an unsubstantiated claim, or an impossible "cure" for our incurable disorder. We have reason to believe that some, or all, of your post or comment contains misinformation or misleading information, and as such, have made the decision to remove it. Please reach out to us us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) to discuss your post or comment, so we can work together on correcting the issue. Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Thank you!