dysautonomiac.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

“You don’t have that, it’s rare.” Some of my diagnoses are not rare, merely poorly understood and under recognized. But this one is rare. Highlight is my Congenital Bronchial Atresia. #raredisease #invisibleillness #rarediseaseday #congenitalbronchialatresia #airquality #smokefree #bronchialatresia

submitted 1 day ago • 0 comments

To commemorate #RareDiseaseDay, here are some recent #Science #Immunology research papers that elucidate the immune mechanisms underlying certain rare human diseases and/or report new strategies to treat them! @science.org

submitted 2 days ago • 1 comment

Rare is beautiful, and we see you. This #RareDiseaseDay we are honored to serve those in our community with rare diagnoses. Through research as well as the Lumia wearable, our mission is to improve lives and illuminate #invisibleillness. #dysautonomia #msa #aag #PAF #veds #marfan & more! #wearlumia

submitted 2 days ago • 0 comments

Same, or I terrify everyone by saying I have a brain blood flow disease, which is far more accurate. 🧠

submitted 2 days ago • 0 comments

✨ Join me for this event about #Lumia on March 11. The content will mostly be for our Members with Lumia wearables, but we’re opening this zoom to the public, for those of you thinking about ordering. Should give you a firmer grounding of our current and upcoming capabilities! ✨ #wearlumia

submitted 2 days ago • 0 comments

The Lumia Health device has been wonderful for our daughter, showing her blood flow to her brain and heart rate. It is helping her understand how to manage her own health. #wearlumia #pots #longcovid #dysautonomia

submitted 26 days ago • 1 comment

Tested a new audio-guided 5 Min Stand Test using Lumia app. This is #pots #longcovid but with peak morning meds #Northera & #caffeine & sodium. White is Lumia Flow Index (blood flow to head), blue is heart rate. For severe #pwme, upright sit test can be done instead. Not for medical use. #wearlumia

submitted 3 days ago • 4 comments

#medsky CME course will take place on-site on Saturday, July 12th #Dysautonomia #POTs #chronichealth facebook.com/events/s/dys...

submitted 3 days ago • 0 comments

Nearly 40 percent of people in the U.S. will be diagnosed with #cancer at some point in their lives, and almost 1 in 5 Americans will die of it. Proposed cuts to National Institutes of Health (NIH) research funding puts lives at risk. bit.ly/3D6Gizi

submitted 3 days ago • 0 comments

House Republicans voted to k*ll me last night in order to give more money to bi/millionaires I CANNOT survive without Medicaid. Not only does it cover my necessary medications & medical care, it pays my caregiving so that I can eat, drink, bathe, etc with the right to live independently.

submitted 4 days ago • 1 comment

slack could always be down if we just believe it is

submitted 4 days ago • 5 comments

February is Marfan awareness month, which means it’s time for me to do my little annual sermon. Hello! I’m Verity, I’m 38, and I have Marfan Syndrome. I’m 6’3”, built like a noodle, my joints are very lax, and there’s a long scar down my sternum from when my heart was repaired in 2019.

submitted 12 days ago • 5 comments

Amplifying this for a lovely follower @verityholloway.bsky.social I was ignorant of Marfan Syndrome. Are you? Look it up :)

submitted 11 days ago • 0 comments

Can you spot when medication wore off, and I forgot to take lunch & evening doses? Lumia Flow Index (blood flow to head) in white, HR in blue. Flow high in morning, except standing drops. Crash w food at lunch combined w/ missed #droxidopa #northera. This is #pots #eds #mcas #longcovid #wearlumia

submitted 4 days ago • 1 comment

This is what a flare looks like for me with Lumia. Blue is HR, white is blood flow. Each time the lines meet is when I stood up. I guess it’s time for me to start taking something for these palpitations, too. 😢 *Lumia is not a medical device. #pots #mecfs #dysautonomia #chronicillness #wearlumia

submitted 8 days ago • 0 comments

Telehealth isn’t a luxury—it’s a necessity. For many of my patients with Long COVID and disabilities, in-person visits are exhausting, inaccessible, or simply not feasible. Removing telehealth coverage means denying care to those who need it most. We must protect access to virtual care.

submitted 8 days ago • 22 comments

“non-menopausal women between the ages of 40 and 54 had a significantly higher risk of developing long covid than men.” Estrogen may be the culprit. wapo.st/3F1CjEw

submitted 8 days ago • 2 comments

Taped to both sides of front door, back door, and garage entrance is this sign. These are my #avianflu protocols for my house. What’s yours? 👠 shoes stay outside or in garage 🐈 cat must stay inside (and ensure door latches, that’s to keep her in) 🤚 wash hands upon arriving 🦠 #birdflu #h5n1 #maskup

submitted 9 days ago • 0 comments

Ever read a study that just stuns you? This one has been wowing me for days now. Norepinephrine release pulses in deep (non-REM) sleep cycle glymphatic fluids over the brain, washing away damaging waste. Your brain rinses itself at night to protect you: cen.acs.org/biological-c...

submitted 9 days ago • 14 comments

When you already have multiple rare diseases all with lab-confirmed diagnoses, and your doctor says, “You can’t have that, it’s rare.” #raredisease #congenitalbronchialatresia #orthostatichypertension and not #orthostatichypotension #gaslighting #medicalptsd #medicaltrauma #diagnosticdelays

submitted 9 days ago • 0 comments

This is data from the Lumia earpiece. ✨ I have POTS, Dysautonomia, Long Covid, Orthostatic Hypertension & other #invisibleillness. #Lumia Flow Index is white, HR is blue. Flow drops during standing. I treat w/ salt #droxidopa #compression #wearlumia #lumiahealth #ehlersdanlos #eds #mcas #spoonie

submitted 9 days ago • 1 comment

Here I’m doing a live demonstration of what it’s like to live with POTS (or other forms of OI) using my Lumia. We look fine on the outside, but this is what’s happening inside. Remember blue is my HR and gray is blood flow to my head. Note: Lumia is not a medical device. #wearlumia #pots #mecfs

submitted 12 days ago • 2 comments

Johns Hopkins study finds 31 blood proteins that distinguish post-COVID POTS patients from healthy controls Key proteins link to immune function, actin filaments, and blood clotting Potential biomarkers for better diagnosis and understanding of POTS www.sciencedirect.com/science/arti...

submitted 16 days ago • 4 comments

Calling all Lumia / STAT friends: I need your Ear Scan!! Our goal is to ship ALL outstanding Pre-Orders before new ones. If you ordered STAT Health #wearable and haven’t done ear scan, contact [email protected] or search email inboxes for “Lumia”. #wearlumia #stathealth #pots #dyautonomia

submitted 18 days ago • 0 comments

Chronic autonomic symptom burden in #longCOVID: a follow-up cohort study link.springer.com/article/10.1... "taken together, these findings suggest that up to one in three patients with LC are at risk of developing POTS, especially female patients with joint hypermobility” #Dysautonomia

submitted 18 days ago • 1 comment

Cerebral hypoperfusion is prevalent in POTS patients with cognitive dysfunction, contributing to reduced quality of life. 61% of participants showed abnormal reduced cerebral blood flow, particularly in the lateral prefrontal and sensorimotor cortices. www.nature.com/articles/s41...

submitted 32 days ago • 1 comment