Discover and read the best of Twitter Threads about #hypermobility

Most recents (5)

instagram.com/p/B-QMkO2Jkb-/

To every doctor and/or provider who says that #EhlersDanlos diagnoses don't matter: Until I learned that my fibro diagnosis was a #misdiagnosis, I was improperly treating myself and causing further injury. It's the difference between acute/chronic injury.
I didn't know I had it for 35 years. I say 35 years because #EhlersDanlos is a birth to death condition. It took 35 years to get me diagnosed and multiple providers. I hope that the @AmerMedicalAssn starts pushing for #EhlersDanlos eduction and soon.
I firmly believe that there are multitudes of people just like me who were #misdiagnosed as having fibromyalgia or some other pain condition, even having symptoms that don't completely add up to fibro, who actually have a type or several types of #EhlersDanlosSyndrome.
Read 7 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
Given food that had cheese in it on Thurs afternoon. Thought I noted the taste but told myself no, b/c restaurant made it clear no dairy. Late Friday night started having problems breathing. Now (Sat) intermittently gasping like a fish on dry land.
This is a delayed Type IV hypersensitivity reaction, say the interwebs. When you get a reaction about 48 hrs after the 'initial insult'. It's slow b/c it requires replication of T cells that have an antigen to one of that food's proteins on their surface.
This is similar to what happens in #celiac. It's also possible for the response to come from basophils or eosinophils. Sometimes it's IgE-based, sometimes it's not. It appears we know little, or I feel there'd be sub-classifications for the reaction types.
Read 12 tweets

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