Io Dolka
@DolkaIoComplex, rare and misdiagnosis-focused patient advocate, Founder of GreyZone. Loves good music, exceptional journalism, democracy, data, and human stories.
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Today is a huge win for our field: #POTS, #MCAS and #MECFS are listed as pathophysiologic mechanisms of #LongCovid in the @theNASEM report on Long Covid definition. Many people and organizations worked tirelessly to make this happen, not only since the pandemic, but for decades…
The lack of a clear and consistent definition for #LongCOVID presents challenges for patients, clinicians, #PublicHealth practitioners, researchers, and policymakers. Read our new report on an evidence-based Long COVID definition: ow.ly/1fOT50SfxPc
From a first rate @NEJM review article today on Diets, a quick summary on the Mediterranean diet body of evidence nejm.org/doi/full/10.10…
Yes, bad, really. nytimes.com/2024/05/06/wel…. by @alicegcallahan More on this later today
No, it is not necessarily all in your head. There might be a reason why you feel this way, and appropriate treatments that can help. #MCAS
[CASE SERIES] Neuropsychiatric manifestations of MCAS and Treatment Response #Mastcells are immune cells that respond to various stimuli. When activated, mast cells release mediators that can cause generalized symptoms. It is not uncommon for #MCAS to be associated with…
My next #CovidVaccine might just be inhaled for better protection.
Robust mucosal immunity vs Covid, which can achieved by an inhalation vaccine (IT below), in non-human primates, provided near complete protection for blocking infections, greatly exceeding that of shots. nature.com/articles/s4158… @BarouchLab
Who is at risk for chronic pelvic pain? Is there a relationship with POTS, IC and Hypermobility? What are the results of treating pelvic vein insufficiency? All answered in our recent publication: journals.sagepub.com/eprint/WE5DIH9… #heds #hsd #pots @MayoGIMFL @TheEDSociety @ehlersdanlosuk
Here we go with #COVID again... as expected.
December 4th Update: As predicted, a huge jump in numbers this week. 40% ⬆️ over last week. Pirola ⬆️⬆️. 🔸850,000 new infections/day 🔸1 in every 390 new people were infected today 🔸1 in every 39 people currently infected
Can AI solve medical mysteries? Most likely yes, I say. The AI #diagnosis aids that will come out in the next few years, could dramatically change the game for #rare diseases and patients who suffer from them. wapo.st/47xwbgQ
Almost 1 out of 2 people living with diabetes remain undiagnosed according to the #IDFAtlas. More must be done to address this chronic disease affecting 537 million people worldwide. #WorldDiabetesDay #BecauseHormonesMatter
🌍✨Happy #WorldDiabetesDay! 🥰Today we celebrate all #PwD and the importance of prioritising diabetes prevention and care & ensure existing commitments are met. 🚀 Our focus is not just celebration, but action! 🌐Together, United, Let’s Act on Diabetes🙌 #IfNotNowWhen
Did you know that even if you aren't a US citizen, your senators and reps still represent you? That's why I called the offices of @SenSchumer and @SenGillibrand today to support a #moonshotforlongcovid. Folks with #LongCOVID need more research for cures. longcovidmoonshot.com
A very useful live graphic on recommended #COVID #treatments based on disease severity and risk for hospitalization. Discuss with your #Doctors if you are at high-risk.
Just because I work, doesn’t mean I can do it while sitting /standing 🤷♀️ #LongCovid #POTS
Regular reminder that I am a) VERY sick and VERY disabled, but B) still working. I have significantly reduced work hours and a lot of flexibility—and I really need the money. Just because we’re working doesn’t mean we’re not sick or that we’re as productive as before
Many people with #dysautonomia are a hard stick even for the most experienced infusion nurses. We’d love to see this technology in all infusion centers.
This vein visualization technology uses near-infrared light, which is absorbed by blood but reflected by the surrounding tissue, to locate veins up to 15mm deep, and then projects the results back on the skin.
Prior-auths are a menace. Doing them right and on time and between peers can make this at least a bit better.
10% of patients referred to Gastroenterology for a suspected disorder of gut-brain interaction have joint hypermobility syndrome. GI diagnoses in these patients: 💩IBS 🫗gastroparesis 🤮cyclic vomiting syndrome 🐄rumination syndrome 🦠SIBO 🔥GERD ⚡️POTS journals.sagepub.com/doi/abs/10.117…
Next up: Dr. Alessio Fasano, "SARS-CoV-2 persistence in MIS-C & pediatric #LongCOVID". Early in the pandemic, there was a misconception that kids were spared (despite never being seen before). Their team thought this was counterintuitive, started looking at impact on kids 28/
This is so true of many invisible and chronic, complex conditions.
Despite challenging symptoms, Ehlers-Danlos syndromes and hypermobility spectrum disorders can often be invisible conditions, with a multitude of issues often going on inside. You never know what someone is going through. #InvisibleDisabilitiesWeek #InvisibleIllness
Does compassion make a difference in an accurate or inaccurate #diagnosis? Any #patiens willing to share experience and take part in this interesting study? #ptsafety #PatientEngagement #PatientCare
Despite challenging symptoms, Ehlers-Danlos syndromes and hypermobility spectrum disorders can often be invisible conditions, with a multitude of issues often going on inside. You never know what someone is going through. #InvisibleDisabilitiesWeek #InvisibleIllness
Autonomic neuropathy can cause symptoms like fatigue, cognitive impairment, GI dysmotility, etc. Unfortunately, many #dysautonomia patients are never tested for autonomic neuropathy. We are trying to change that through improved clinician education!
The 2023 SIDM Award for Excellence in Patient and Family Engagement was presented on October 10 to Helen Haskell, President of Mothers Against Medical Error and Consumers Advancing Patient Safety. Congratulations!
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