Ehlers-Danlos Awareness Month – Facts 18-21

(You’ve probably noticed that I started grouping up the EDS facts instead of doing them once a day – this is because many of them make more sense together, when read one after the other.)

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Fact #18: Possible dental manifestations of EDS include a high palate, crowded teeth, gum disease and hypermobile tongue. Those with EDS are also more prone to cavities as well as weakness of both the enamel and tooth roots.

Fact #19: EDS can cause chronic debilitating pain throughout the entire body. Whether from chronic, repeated joint subluxations and dislocations or degenerative joint disease, this is often easily the most difficult aspect of daily life with EDS.

Fact #20: EDS can cause several gastrointestinal complications, one of the more serious being gastroparesis meaning: partial paralysis of the stomach causing food to remain in the stomach for longer than normal or preventing the stomach from emptying entirely.

Fact #21: When EDS is suspected it’s important to be thouroughly evaluated by a team of specialists such as an opthalmologist, geneticist, orthopedist and most importantly a cardiologist. It’s also important that those specialists be familiar and knowledgeable of connective tissue disorders such as EDS.

5 thoughts on “Ehlers-Danlos Awareness Month – Facts 18-21

  1. Thank you so much Katie for referring me to Sandy. Now I have more hope!

    About this post and the dental manifestations of EDS, Gen was born with a significant asymmetry in her upper jaw but I never noticed anywhere that that was mentioned. She also had the high palate and dental crowding – but then my siblings and I have the same characteristics. Just thought I would share the asymmetry with you as you are so knowledgeable and obviously very smart. Perhaps some day you will hear of someone else with the same thing and say “Hey, I’ve heard of that before…”. The voice of the future!

    Also read you are on beta blockers and I watched the conference on EDS and sleep last night which was recommended to me by A. Did you see it? https://vimeo.com/35766364

    If you have a minute to watch it I would really appreciate your thoughts on the matter. I will be discussing this with the doctor on Tuesday – I think Gen needs to start her meds asap. Also, are you on meds for your arteries? You mentioned circulation issues…

    Thank you!

    Linda xox

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    • Hi Linda! I’m so glad you got in touch with Sandy! I can’t say enough good things about her (I’m sure you’ve noticed lol!).

      Thank you for linking to that video, it was very interesting! I’ve lived with sleep problems for as long as I can remember now, it’s exhausting. I had issues with my sleep even before the chronic pain, it seemed to start to some extent when I was a toddler. But now it’s much worse. Pain makes it hard to sleep, not sleeping makes the pain worse, which again makes it harder to sleep – it’s a viscous cycle – that I’m sure your daughter’s probably well aware of. :(

      I’m not on beta blockers anymore, I was having a hard time with the side effects so my cardiologist and I decided it would be fine if I went off of them since my aorta is still stable. Yay! While I was on them I personally didn’t notice any improvement in the quality of my sleep or my energy levels during the day (the Propranolol actually made me very tired all of the time). That being said, what was talked about in that video and the theory behind it makes a lot of sense!! I imagine it does or could work for a lot of people, specifically those with EDS and autonomic issues.

      I’m not currently on any medication for my arteries or circulation, I was on the beta blockers for related issues (lessening the load on my aorta and lowering my heart rate – which also helped the POTS). I seem to go through periods of time when I get so tired of dealing with doctors and new medications that I largely neglect making appointments and facing things – which I know is silly but the problems will be there a month from now so I often just push them aside to give myself a bit of a break. The exception to those time outs would be if something seemed to need urgent treatment or attention lol. I’m also used to not getting any help when I do bring things up so it always feels like an uphill battle, but again I think I’m preaching to the choir!

      My mom and I have the dental crowding and high palate too (often seen in MFS as well). I know that jaw asymmetry is commonly found in Marfan Syndrome because of the narrow upper jaw (this is the cause of my cross bite), so far I haven’t been able to find anything in relation to that and EDS either.

      Hugs to you both! Good luck at the doctor appointment, I will be keeping you in my thoughts!

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      • Thank you for your valuable information. Gen is at the point of not being able to stand or walk at all. I think medicating her is one of the things that need to be considered ASAP. Are you at that point? I mean, the paint is one thing but she’s actually like the worse cases that doctor mentioned in the video. I’m so worried.

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        • I’m definitely not as severe as your daughter when it comes to walking and standing. My orthostatic intolerance issues are very minimal in comparison to some of the things I’ve heard (like what your daughter goes through). Something definitely needs to be done ASAP for her, that is scary and my heart goes out to you both. :(

          Did you watch that episode of mystery diagnosis featuring EDS I posted on here? I think you would find it very interesting, the teenage girl on there ended up in a wheel chair because she too couldn’t walk very far before passing out (among many other issues). Here’s the youtube link for that http://www.youtube.com/watch?feature=player_embedded&v=IBml-4MehBU

          Maybe her doctors could try her in a cervical collar just to see if there’s any improvement. The reason I say that is because the tissue and joints are so weak in EDS that there are many people with it whose necks don’t support their heads properly, causing problems. Also, cranial settling, cervical cranial instability and retroflexed odontoid can all be seen in relation to EDS (I wouldn’t say they’re a common manifestation of it but they are seen far more in EDS patients than those without).

          Sorry she’s having such a hard time. :( xox

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