EDS Awareness Month AMA

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Pathway
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Right, so it's getting towards the end of May, so I figure I should do something for it. Obviously, it's a bit difficult considering Lockdown, etc.

Anyway, it's Ehlers-Danlos Syndrome Awareness Month. EDS is a multisystemic genetic connective tissue disorder, which basically means it impacts everything. If you have questions I'd be happy to answer them.
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The_Lonely_Goatherd
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:penguinhug:

You mention the word "genetic", so am just wondering (coz I know zilch about EDS) whether you've had symptoms from birth or whether it tends to develop at a later stage in life?
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(Original post by The_Lonely_Goatherd)
:penguinhug:

You mention the word "genetic", so am just wondering (coz I know zilch about EDS) whether you've had symptoms from birth or whether it tends to develop at a later stage in life?
Yes, I did. I was breech and so my mum had to have a C-section, and I was early as a result. I've been told that being breech and not moving much when my mum was pregnant was because of poor muscle tone (floppy baby lol). I also had chest wall deformities because of the EDS, walked quite late, trouble with fine motor control, eating difficulties, etc. all are related to the EDS. Things have obviously progressed since then but I don't think that's out of the ordinary for someone with EDS.

Thank you for the question! :jumphug:
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The_Lonely_Goatherd
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(Original post by Pathway)
Yes, I did. I was breech and so my mum had to have a C-section, and I was early as a result. I've been told that being breech and not moving much when my mum was pregnant was because of poor muscle tone (floppy baby lol). I also had chest wall deformities because of the EDS, walked quite late, trouble with fine motor control, eating difficulties, etc. all are related to the EDS. Things have obviously progressed since then but I don't think that's out of the ordinary for someone with EDS.

Thank you for the question! :jumphug:
Oh gosh Thank you for answering my question, I wasn't quite sure

Follow-up question: what's the one thing you wish people understood/appreciated more when it comes to EDS awareness/having an EDS diagnosis? :moon:
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(Original post by The_Lonely_Goatherd)
Oh gosh Thank you for answering my question, I wasn't quite sure

Follow-up question: what's the one thing you wish people understood/appreciated more when it comes to EDS awareness/having an EDS diagnosis? :moon:
Umm, I'm not sure if there is one thing. I would like people to understand that just because I don't complain about dislocations continuously that it doesn't mean it doesn't hurt. My old physiotherapist told me once that dislocations shouldn't hurt for me because they happen so frequently and I can reduce them myself more often than not. He said this because I reduced a shoulder dislocation in front of him and didn't really complain about it bar saying sorry for interrupting. But just because something happens a lot doesn't mean it doesn't still hurt, you just learn to deal with it differently. I guess a general thing that I wish people understood about EDS and it's comorbidities is that just because I am not talking about something doesn't mean it isn't a problem lol. Same extends to the mental health implications and the uncertainty of living with something like this when you are severely affected.
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The_Lonely_Goatherd
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(Original post by Pathway)
Umm, I'm not sure if there is one thing. I would like people to understand that just because I don't complain about dislocations continuously that it doesn't mean it doesn't hurt. My old physiotherapist told me once that dislocations shouldn't hurt for me because they happen so frequently and I can reduce them myself more often than not. He said this because I reduced a shoulder dislocation in front of him and didn't really complain about it bar saying sorry for interrupting. But just because something happens a lot doesn't mean it doesn't still hurt, you just learn to deal with it differently. I guess a general thing that I wish people understood about EDS and it's comorbidities is that just because I am not talking about something doesn't mean it isn't a problem lol. Same extends to the mental health implications and the uncertainty of living with something like this when you are severely affected.
Sorry, limiting you to only one thing to mention was a bit mean You raise a very good point though. And wow, just wow, at your old physiotherapist That's some warped logic right there

:hugs:
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sunshinehss
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Does anyone else in your family have EDS? What is day to day life like?

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Pathway
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(Original post by The_Lonely_Goatherd)
Sorry, limiting you to only one thing to mention was a bit mean You raise a very good point though. And wow, just wow, at your old physiotherapist That's some warped logic right there

:hugs:
It's okay, I explained that it's not how it works, he understood after a while lol. I was one of the first EDS patients he had ever worked with tbf so it makes sense he might not get it. :lol:

(Original post by sunshinehss)
Does anyone else in your family have EDS? What is day to day life like?

As of right now I am the only one with any sort of EDS diagnosis (currently my diagnosis is untyped EDS), but both parents, my brother and random people in my extended family have aspects that could be EDS related. The type my specialists think I have though is recessive (not all EDS types are recessive for context), which explains why no one else has a diagnosis of EDS as of right now, but why both parents have aspects potentially relating to it. I'm waiting to be tested by genetics but because of the pandemic things are a bit slow (understandably!).

Day to day life fluctuates, some days are better than others, e.g. some days can be good pain days where it doesn't limit me as much, other days I can't be upright. I have I have dislocations, pain and fatigue everyday, but to varying degrees. Then comorbid conditions also affect me, obviously - e.g. GI issues, bladder problems, neuro issues, heart issues, etc.. It can be quite difficult to manage, but I've adapted things to suit me. E.g. when typing is difficult I talk to my computer which writes down what I am saying, or I wear additional braces to manage things, or when I was able to write I would make pens fatter by tying things round them so the grip was bigger. Basically, my days fluctuate and adaptation is always necessary.
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CoolCavy
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:hugs:
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The_Lonely_Goatherd
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Another question, do tell me if this is too intrusive or triggering:

To my (noob) eyes reading this, it feels like your EDS is a particularly severe case? But from what you've said about your family having certain symptoms, it seems it's more of a spectrum? Just wondering where you feel you are on that spectrum and whether you would be deemed by medical professionals as among the most severe cases

Sorry, that made more sense than it does typed out Hope you get what I mean
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Pathway
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(Original post by CoolCavy)
:hugs:
:hugs:

(Original post by The_Lonely_Goatherd)
Another question, do tell me if this is too intrusive or triggering:

To my (noob) eyes reading this, it feels like your EDS is a particularly severe case? But from what you've said about your family having certain symptoms, it seems it's more of a spectrum? Just wondering where you feel you are on that spectrum and whether you would be deemed by medical professionals as among the most severe cases

Sorry, that made more sense than it does typed out Hope you get what I mean
Not intrusive or triggering!

I'm on the more severe end of the spectrum, yes, but there are people who are objectively more affected than I am and others who are less affected. It really is a spectrum. Some people can be so mildly affected they don't realise it, and only are made aware of it if a sibling or their child is diagnosed, does that make sense? Where as some people can have multiple body systems that are failing/having issues (e.g. intestinal failure, organ rupture, bladder paralysis, recurrent anaphylaxis, etc.). Some people have EDS as a diagnosis and have no other comorbid conditions too, but their joint issues could be severe, or not. It also depends on what variant you have, if you have vascular EDS then by default you are considered to have a severe type of EDS as it is life threatening, whereas hypermobile EDS is regarded as mild in general, but people with hEDS can be severely affected depending on how their EDS presents e.g. hEDS patients with intestinal failure or other issues are generally considered severely affected (at least in their GI tract).

Sorry, it is very confusing. Hope it makes sense.
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The_Lonely_Goatherd
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(Original post by Pathway)
:hugs:



Not intrusive or triggering!

I'm on the more severe end of the spectrum, yes, but there are people who are objectively more affected than I am and others who are less affected. It really is a spectrum. Some people can be so mildly affected they don't realise it, and only are made aware of it if a sibling or their child is diagnosed, does that make sense? Where as some people can have multiple body systems that are failing (e.g. intestinal failure, organ rupture, bladder paralysis, recurrent anaphylaxis, etc.). Some people have EDS as a diagnosis and have no other comorbid conditions too, but their joint issues could be severe, or not. It also depends on what variant you have, if you have vascular EDS then by default you are considered to have a severe type of EDS as it is life threatening, whereas hypermobile EDS is regarded as mild in general, but people with hEDS can be severely affected depending on how their EDS presents e.g. hEDS patients with intestinal failure or other issues are generally considered severely affected (at least in their GI tract).

Sorry, it is very confusing. Hope it makes sense.
Makes complete sense, thanks for answering my questions so far :penguinhug:
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(Original post by The_Lonely_Goatherd)
Makes complete sense, thanks for answering my questions so far :penguinhug:
Thank you for asking questions! :hugs:
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Anyone else have questions? :ninja:
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Chronoscope
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(Original post by Pathway)
Anyone else have questions? :ninja:
Do you get dislocations and if you do, do they happen often? :hugs:

Was diagnosed as hypermobile myselfwhen I was younger (probably mentioned before somewhere )- not sure the which one it is, because I from what I've gathered they renamed the diagnosis to HSD which is what I think is what its called now :confused:
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DiddyDec
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:five:

I didn't even know we had our own month.
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DiddyDec
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What is your go to product for either cooling or heating joints/muscles?
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Pathway
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(Original post by Chronoscope)
Do you get dislocations and if you do, do they happen often? :hugs:

Was diagnosed as hypermobile myselfwhen I was younger (probably mentioned before somewhere )- not sure the which one it is, because I from what I've gathered they renamed the diagnosis to HSD which is what I think is what its called now :confused:
I do, some joints are worse than others. But yes I do have them daily. I can self manage for the most part now.

Afaik hypermobility isn't necessarily an issue by itself, but if you have pain, instability, dislocations, etc. Then you'd have a symptomatic HSD, without complicating factors you're just on the hypermobility spectrum asymptomatically!

(Original post by DiddyDec)
:five:

I didn't even know we had our own month.
Yes! vEDS people have their own day in May too, #RED4VEDS. May 21st. A lot of the comorbid issues have their own months or days as well. Hope you're managing well?
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DiddyDec
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(Original post by Pathway)
Yes! vEDS people have their own day in May too, #RED4VEDS. May 21st. A lot of the comorbid issues have their own months or days as well. Hope you're managing well?
I'm not ideal, I would kill to be able to see a physio right now :lol:
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(Original post by DiddyDec)
What is your go to product for either cooling or heating joints/muscles?
Electric heat pads haha, mast cell doesn't play too well with many things for me (e.g. adhesives, cream, etc). Also don't weigh as much compared to hot water bottles so less dislocations. However, when I need to go out but need heat there are these stick on heat pads I use called Hoteez (I think?), and I deal with the reactions instead for pain relief. :lol:

(Original post by DiddyDec)
I'm not ideal, I would kill to be able to see a physio right now :lol:
Oh man, I know right? Sucks. The EDS Society has put things on their YouTube channel which might help?
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