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

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 17 hours 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 25 days ago • 1 comment

Ever feel dizzy in the shower? Here’s why. White line is cerebral blood flow and blue line is my heart rate. Those two lines should never cross. Showers are brutal for blood flow. #wearlumia #dysautonomia #pots #mecfs

submitted 29 days ago • 1 comment

Learning all about electrolyte supplements and how they affect my body. Remember, blue line is HR, white is cerebral blood flow. Pic A is my body on Trioral. Pic B is my body on Liquid IV. Lumia allows me to see in real time how these products work for me. Fascinating! #wearlumia #pots #mecfs

submitted 26 days ago • 2 comments

Our next Lumia Health webinar update March 11 is geared to our Members, & open to the public! Focus is future of Lumia fitting plus new features coming up! Advance registration required: us02web.zoom.us/webinar/regi... Register to get replay. #pots #longcovid #pwme #dysautonomia #wearlumia

submitted 1 day ago • 0 comments

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 1 day ago • 4 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 3 days ago • 1 comment

Highlight on one of our upcoming features!

submitted 1 day ago • 0 comments

One way Lumia can help people self-manage complex conditions with #orthostaticintolerance is by reinforcing compliance with a doctor's lifestyle recommendations & treatment plan, & by driving awareness of what factors or interventions contribute to symptoms. #chronicillness #medsky #neisvoid #pwme

submitted 3 days ago • 0 comments

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 7 days ago • 0 comments

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 10 days ago • 2 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 8 days ago • 1 comment

Lumia’s new Live Mode feature can power new dimensions of self discovery! ✨ Learn what raises or drops the blood flow to your head, to better self-manage #chronicillness like #pots #dysautonomia #syncope #longcovid #dysautonomia #orthostaticintolerance #peripheralneuropathy #pwme #sjogrens

submitted 10 days ago • 1 comment

From @meresearchuk.bsky.social A review highlighted approximately half of patients symptomatic for orthostatic intolerance do not meet the heart rate & blood pressure thresholds required for a diagnosis of PoTS. Yet this group likely has abnormalities in cerebral blood flow. bit.ly/4gxWtTK #MEcfs

submitted 16 days ago • 2 comments

Happy Valentine’s Day from all of us at Lumia Health. You light up our life! #wearlumia #wearable #stat #pots #longcovid #pwme #orthostaticintolerance #lumia #fainting #medsky #chronicillness #brainfog #posturalorthoststictachycardiasyndome #dysautonomia #neuropathy #synuclein

submitted 14 days ago • 0 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 16 days ago • 0 comments

Post-COVID-19 Small Fiber Neuropathy as a New Emerging Quality of Life-Threatening Disease: A Systematic Review www.mdpi.com/2076-2607/13... #LongCovid #SFN #PASC 1/

submitted 16 days ago • 10 comments

Exciting to see the first home stand tests w/ the Lumia Health wearable. Data is not for medical use. Lumia can help people self-manage symptoms of #orthostaticintolerance and adhere to healthy lifestyle guidelines from their doctor. #pots #longcovid #pwME #chronicillness #dizziness #medsky

submitted 17 days ago • 3 comments

This tiny in-ear device caught a seizure last night, our first piece of physiological data to help with further treatment and management of my condition from home 24/7/365. This will be so vital when alert features roll out, since it should be able to notify me about these drops as they begin.

submitted 23 days ago • 1 comment

This is a truly striking graph, perhaps first #seizure we've seen caught fully w/ Lumia. Lumia Flow Index is shown to be good proxy of #cerebralbloodflow changes caused by standing #wearlumia ✨ (The Lumia wearable is designed to help people self-manage conditions, and is not a medical device.)

submitted 22 days ago • 0 comments

I have brain blood flow disease w/ #pots #longcovid. This is standing, lying, standing, while treated w/ compression 30-40, #Droxidopa, sodium. Grey = Lumia Flow Index, blue = HR. Lumia Flow Index is shown to be a good proxy for #cbf changes caused by standing. #wearlumia @lumiahealth.bsky.social

submitted 22 days ago • 1 comment

Duke researchers find cerebral blood flow drops, not heart rate or blood pressure, are key to orthostatic intolerance in POTS, long COVID, and ME/CFS. Many patients are misdiagnosed. Better CBF measurement is needed. www.ahajournals.org/doi/10.1161/...

submitted 26 days ago • 3 comments

New review by US authors Cerebral Blood Flow in Orthostatic Intolerance www.ahajournals.org/doi/10.1161/... Has subsections on ME/CFS & long Covid #MEcfs #LongCovid

submitted 25 days ago • 2 comments

“Cerebral blood flow (CBF) is vital for delivering oxygen and nutrients to the brain. Many forms of orthostatic intolerance (OI) involve impaired regulation of CBF in the upright posture, which results in disabling symptoms...” ://www.ahajournals.org/doi/10.1161/JAHA.124.036752

submitted 22 days ago • 0 comments

Lumia Health Unveils Cutting-Edge Wearable for Head Blood Flow Tracking at CES 2025 #United_States #Las_Vegas #CES_2025 #Lumia_Health #wearables

submitted 53 days ago • 0 comments

PLRC & 4YouAndMe are recruiting Long COVID patients to work on an app to help patients manage symptoms. Participants are compensated and will receive wearable devices. Please see the attached flyer for more info, and contact [email protected] with questions or if you are interested!

submitted 38 days ago • 0 comments

New episode of The POTScast features Daniel Ewok Lee, inventor of the Lumia wearable device tracking blood flow to head in ppl with #POTS, #LongCovid #syncope #dysautonomia the-potscast.castos.com/episodes/e20...

submitted 107 days ago • 1 comment

Orders are open for the world's smallest #wearable device at www.lumiahealth.com. HSA / FSA eligible, for #POTS, #LongCovid, #MECFS, #Fainting. Lumia tracks blood flow to head, a close proxy for Cerebral Blood Flow. USA only, ages 18+, iPhone & Membership required. Not a medical device #dysautonomia

submitted 24 days ago • 1 comment

Orders are open for the world's smallest #wearable device, @lumiahealth.bsky.social at www.lumiahealth.com. HSA / FSA eligible, for #POTS, #LongCovid, #MECFS, #Fainting. Lumia tracks blood flow to head, a close proxy for Cerebral Blood Flow. USA only, ages 18+, iPhone & Membership required. #cbf

submitted 24 days ago • 0 comments

We’re opening #wearlumia orders Feb 4 at 10am ET. For US residents 18+ only, requires iPhone & Membership to work. The last preorders ship first, if Ear Scan done. Www.lumiahealth.com Cc @lumiahealth.bsky.social #pots #mecfs #dysautonomia #longcovid #posturalorthostatictachycardiasyndrome #cbf

submitted 25 days ago • 0 comments

Orders open 10am ET tomorrow for Lumia wearable devices. We'll ship remaining pre-orders in February, and begin shipping new ones in March. Currently, Lumia is for US residents, adults 18+, requires iPhone & Membership. HSA/FSA eligible. Not for medical use. #pots #longcovid #mecfs #fainting

submitted 25 days ago • 2 comments

For my blood flow challenged friends. My Lumia has given me so much valuable information. You can order your own next week! ❤️🥹

submitted 31 days ago • 0 comments

Dysregulations in hemostasis, metabolism, immune response, and angiogenesis in post-acute COVID-19 syndrome with and without #posturalorthostatictachycardiasyndrome: a multi-omic profiling study www.nature.com/articles/s41... #POTS #LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid 1/

submitted 460 days ago • 1 comment