What are you doing today?

[JuiceBox52]

And what part of the body doesn't it affect?
Like seriously...

Nothing. It even affect the brain, skin, eyes, veins, organs, bones, muscles, fingernails, hair etc etc

 

[Rocky998]

Nothing. It even affect the brain, skin, eyes, veins, organs, bones, muscles, fingernails, hair etc etc

I understand how most of those are affected but the ones that I REALLY don't understand are the brain, eyes, and veins. How does it affect that?

 

[Fishmanic]

Use fluoride toothpastes and a flouride rinse like ACT to strengthen tooth enamel.

 

[JuiceBox52]

I understand how most of those are affected but the ones that I REALLY don't understand are the brain, eyes, and veins. How does it affect that?

It affects your connective tissue, which nearly every part of your body has. You have collagen in your eyes, brain and veins.

 

[Rocky998]

It affects your connective tissue, which nearly every part of your body has. You have collagen in your eyes, brain and veins.

Ohhh ok... Wow.
I was also doing a teensy bit of research on my own as well and saw the same.
I saw just a few of the symptoms.
That makes sense now. Thank you for answering my questions and sorry if I may have offended you by asking

 

[JuiceBox52]

Ohhh ok... Wow.
I was also doing a teensy bit of research on my own as well and saw the same.
I saw just a few of the symptoms.
That makes sense now. Thank you for answering my questions and sorry if I may have offended you by asking

Of course! Always happy to teach people about it, it’s not common knowledge so if someone is genuinely interested I’m happy to share

You didn’t offend me

 

[Rocky998]

Like I've said before I always get nervous when asking about other people's conditions so I just always say sorry in advance out of the fear theyay take what I've asked the wrong way if that makes sense
Thank you again

 

[NearMeBettas]

You have EDS too!?

Yes lol!

 

[NearMeBettas]

So how do you two try to protect your teeth? If the enamel is weak I imagine it is very easy to get tooth damage.
Do you have things that boost enamel?

I am now having a xylitol mint after eating, I'm hoping it will help. It is supposed to help heal your enamel. I wear a mouthguard at night as I grind my teeth due to my loose jaw from EDS. I also can wear high heels because the joints that hold my ankles together are loose and I am more at risk for a sprain or twist. My grace has gotten better as I age lol, and I do wear shorter blocky heels once in a while. (Don't judge me, I can't resist! )

I also have mast cell activation syndrome which causes the little mast cells to fire (for me in my stomach and my sinuses). It causes me to get severe sinus headaches and vomiting episodes. I normally just get the head stuff now but when I was younger I would have weekly episodes. I dry heaved so much I tore the valve in my stomach.

On top of all that I have Gastroparesis due to the mast cells firing in my stomach. It caused my stomach not to work properly so the food will sometimes sit in my stomach for a day or two before I have a vomiting episode. Whenever we got a stomach bug I got it worse.

 

[JuiceBox52]

I am now having a xylitol mint after eating, I'm hoping it will help. It is supposed to help heal your enamel. I wear a mouthguard at night as I grind my teeth due to my loose jaw from EDS. I also can wear high heels because the joints that hold my ankles together are loose and I am more at risk for a sprain or twist. My grace has gotten better as I age lol, and I do wear shorter blocky heels once in a while. (Don't judge me, I can't resist! )

I also have mast cell activation syndrome which causes the little mast cells to fire (for me in my stomach and my sinuses). It causes me to get severe sinus headaches and vomiting episodes. I normally just get the head stuff now but when I was younger I would have weekly episodes. I dry heaved so much I tore the valve in my stomach.

On top of all that I have Gastroparesis due to the mast cells firing in my stomach. It caused my stomach not to work properly so the food will sometimes sit in my stomach for a day or two before I have a vomiting episode. Whenever we got a stomach bug I got it worse.

Me too to all

 

[Fishmanic]

For a very uncommon condition such as EDS, I find it interesting that 2 of our members have it. Maybe we have a few thousand active members. I would guess that 2 out of say 3000 or .07 % is probably much larger percentage than the percentage of the whole population that have EDS.. But then that figure may be higher among our members as we really don't know whether on not other members have EDS.

 

[NearMeBettas]

Me too to all

Interesting.

 

[JuiceBox52]

Interesting.

We’ll except for the torn valve

 

[NearMeBettas]

Ohhh ok... Wow.
I was also doing a teensy bit of research on my own as well and saw the same.
I saw just a few of the symptoms.
That makes sense now. Thank you for answering my questions and sorry if I may have offended you by asking

My mom lost some vision in one eye in a fall, the loose ligament stretched out in her eye due to EDS.

 

[NearMeBettas]

We’ll except for the torn valve

So you have MCAS too?

Really though, I think they are linked. I also think it's a lot more common they we think.

My parents are from two different parts of America, and their lineage is from two different countries, and they both have EDS.