Mostly here for azremodehar, but anyone can listen in

Planning a big seminar in October

New Categories for EDS, like we needed more

New gene types have been found

App: Ehlers Danlos Society

Brittle Cornea Syndrome well, I'm gonna have nightmares niw

All EDS is caused by an amino acid processing deficiency

They still have not found the gene for type 3

So glad I do not have the super stretchy skin

DITTO

The thing I had in January was a molloscoid pseudotumer!

We have collagen flowers in our skin!

o___O

da fuk

The thing that had my arm in a sling for two days

yeah

DNW

We should not use opioids for pain, ever

Need 2000mg Vit C

Need plastic surgeon for surgery

Do not demonstrate your hypermobility: no party tricks

Avoid sunlight

Use light non-weight bearing exercise

No more Zaph giving us shit over stressful movies and shows, it damages our lymbic system

Pain meds and anti inflammatory drugs should be a last resort

Echocardiogram every 3-5 years

So my next should be in 2020

Colonoscopy IS and increased risk for us

Can have higher B12 in blood without actually absorbing it

Must use methylated B12

Must continue with 50,000 unit Vit D

jegus

Avoid triggers, monitor your diet, do your meds and supplements

So, not too much we didn't already know

yeah

the 'no party tricks' is p. obvious, but kinda poutyface even though I already knew it, because the folding my thumb behind my hand thing is pretty cool >__>

You can do the other one where you stick it out through your fist