Discover and read the best of Twitter Threads about #hEDS
Most recents (24)
A major part of the stories of #iamthefaceofMAID is that some health conditions are NOT recognized and/or treated in Canada (like MCS and hEDS). BUT!!! They are recognized by #MAID. This is THE disconnect Canada! This is why we need to talk about #IamthefaceofMAID 1/n
If #MAID will recognize conditions, like #MCS and #hEDS, and there are not even specialists in Canada that treat those conditions. Well, we have a problem.
2/n
2/n
The #hEDS community struggles every day, thousands of us, for treatment that we know is available but it is not offered in Canada. Often we travel to the US for diagnosis because there are so few specialists in Canada. The surgeries needed are not offered in Canada. 3/n
Many people asking recently "why is an #hEDS diagnosis important if there's nothing I can do about it?" There's a simple answer and a complex one. Simply: because that's not TRUE - there's LOADS we can do about it. A brief 🧵
1. Knowledge is power. Knowing the answer that connects the dots for your symptoms helps put YOU in control of your health. Its also extremely validating to have answers.
"Covid-19 and Ehlers-Danlos syndrome: the dangers of the Spike protein of SARS-CoV-2"
Looks like there IS increased risk for #hEDS and #EDS and not just from Covid itself but also from the mRNA vaccine.
docs.google.com/document/d/1cn…
@remissionbiome #MECFS #LongCovid
Looks like there IS increased risk for #hEDS and #EDS and not just from Covid itself but also from the mRNA vaccine.
docs.google.com/document/d/1cn…
@remissionbiome #MECFS #LongCovid
@remissionbiome 1. Jean-Marc Sabatier – Although EDS is a rare genetic pathology, with an overall incidence of around 1 in 5,000 people (highly variable incidence depending on the type of EDS), I have observed that a very high number of people suffering from the most severe forms of long Covid
@remissionbiome 2. (post-infection or post-vaccination sequelae) had EDS. As mentioned earlier, EDS is systemic and directly linked to abnormalities in the connective tissue of genetic origin (production of collagen). It seems to me quite possible that the deficiency in proteins of
Apotheken warnen vor Medikamentenengpass. Ein Problem, das #Medizinbrennt weiter verschärfen wird.
Auch wenn das BfArM noch keinen Hinweis auf versorgungsengpässe sieht, da es meistens Alternativen gibt, heißt meistens leider nicht immer. Für einen tagesschau.de/inland/apothek…
Auch wenn das BfArM noch keinen Hinweis auf versorgungsengpässe sieht, da es meistens Alternativen gibt, heißt meistens leider nicht immer. Für einen tagesschau.de/inland/apothek…
Gewissen Prozentsatz an PatientInnen besteht der Engpass also schon jetzt.
Gerade bei PatientInnen von #seltenenErkrankungen, für deren Behandlung manchmal eh ausschließlich "off-label" Medikamente zur Verfügung stehen, haben jetzt schon Pech gehabt.
Ich bin eine dieser
Gerade bei PatientInnen von #seltenenErkrankungen, für deren Behandlung manchmal eh ausschließlich "off-label" Medikamente zur Verfügung stehen, haben jetzt schon Pech gehabt.
Ich bin eine dieser
PatientInnen. Das "Glücksspiel, die notwendigen Medikamente zu bekommen" habe ich bereits letztens verloren.
Diesmal wurde ein KH Aufenthalt mein "Glück im Unglück". Aber was ist beim nächsten mal? Was mache ich nach dem kh,...?
Und ich werde bei weitem nicht die einzige sein.
Diesmal wurde ein KH Aufenthalt mein "Glück im Unglück". Aber was ist beim nächsten mal? Was mache ich nach dem kh,...?
Und ich werde bei weitem nicht die einzige sein.
#MedizinBrennt auch, wenn die Verfügbarkeit von Medikamenten zum Glücksspiel wird.
Heute habe ich das Spiel verloren.
Eins meiner Medikamente ist aktuell nicht mehr lieferbar. Zuletzt ließ sich das Problem noch mit der Anpassung von der Dosierung lösen, inzwischen ist es gar
Heute habe ich das Spiel verloren.
Eins meiner Medikamente ist aktuell nicht mehr lieferbar. Zuletzt ließ sich das Problem noch mit der Anpassung von der Dosierung lösen, inzwischen ist es gar
Nicht mehr verfügbar.
Leider hatte die Apotheke aktuell auch (ebenfalls aufgrund von Personalmangel) keine Zeit, zu schauen, ob es verfügbare Alternativen gibt (ich weiß keine).
Das #MZEB (Uni Klinik Ambulanz) brauch ich nicht anrufen. Dort erreicht man seit Wochen keinen.
Leider hatte die Apotheke aktuell auch (ebenfalls aufgrund von Personalmangel) keine Zeit, zu schauen, ob es verfügbare Alternativen gibt (ich weiß keine).
Das #MZEB (Uni Klinik Ambulanz) brauch ich nicht anrufen. Dort erreicht man seit Wochen keinen.
Und mit #seltenenErkrankungen habe ich im ambulanten Bereich aktuell leider ebenfalls verloren. Dort braucht es leider manchmal mehr Zeit, da Behandlungen nicht alltäglich sind.
Und Zeit fehlt gerade am meisten.
Es heißt also mal wieder eine Runde "Freiflug durchs System".
Und Zeit fehlt gerade am meisten.
Es heißt also mal wieder eine Runde "Freiflug durchs System".
📺🧵Key takeaways from @IndependentSage
@DrGrahamLJ on the long term risks of #SARSCoV2:
🔹Covid is a blood vessel disease
🔹1/2 billion virus in 1tsp of saliva
🔹Importance of mouth hygiene
🔹Viral load in mouth predictor of acute illness
@DrGrahamLJ on the long term risks of #SARSCoV2:
🔹Covid is a blood vessel disease
🔹1/2 billion virus in 1tsp of saliva
🔹Importance of mouth hygiene
🔹Viral load in mouth predictor of acute illness
Clear explanation by @Sunny_Rae1 of #SARSCoV2 as:
🔹a blood vessel disease
🔹 pathophysiology of microclots & endothelial damage
🔹present in #LongCovid & a lesser degree in 'recovered' patients
🔹a blood vessel disease
🔹 pathophysiology of microclots & endothelial damage
🔹present in #LongCovid & a lesser degree in 'recovered' patients
Summary by @Sunny_Rae1
Wie nah Freude und #Trauer manchmal beieinander liegen können, hätte ich mir früher nie vorstellen können.
Seit mein Hund gestorben ist, weiß ich es besser...
Bei jedem mal, wenn ich an ihn denke, oder jemandem von ihm erzähle, freue ich mich, dass er in Erinnerungen immer bei
Seit mein Hund gestorben ist, weiß ich es besser...
Bei jedem mal, wenn ich an ihn denke, oder jemandem von ihm erzähle, freue ich mich, dass er in Erinnerungen immer bei
Mir ist. Ich genieße jeden moment davon. Und gleichzeitig tut es so unendlich weh.
Seit gestern habe ich, das 1. Mal seitdem einen Hund zu Gast. Eine ganz andere Sparte #kleineSchritte, als ich sie sonst gehen muss
Es gibt Momente, in denen ich den Schmerz am liebsten vermeiden
Seit gestern habe ich, das 1. Mal seitdem einen Hund zu Gast. Eine ganz andere Sparte #kleineSchritte, als ich sie sonst gehen muss
Es gibt Momente, in denen ich den Schmerz am liebsten vermeiden
Würde. Aber mir würde zeitgleich so viel verloren gehen, denn das "Erinnern" wurde zu unsrer neuen gemeinsamen Zeit, die mir viel bedeutet. 🥰
Und auch wenn es leider nicht mehr ging, dass ich mit meinem Hund den größeren Radius durch Rollstuhl/Zuggerät genießen konnte, so war
Und auch wenn es leider nicht mehr ging, dass ich mit meinem Hund den größeren Radius durch Rollstuhl/Zuggerät genießen konnte, so war
I have a strong feeling that many #POTS patients are in effect in a prodromal phase of #mecfs. Not all #POTS patients will end up with #mecfs, but almost all #mecfs patients had #POTS either before (often unknowingly;"anxiety") or early in their #mecfs course./1
Often these patients with POTS that later develop #mecfs fall into the #hEDS category. Their descent into #mecfs is often but not always triggered by infections or, more generally, inflammatory events (surgery, accidents,..). We don't know what #hEDS is exactly but at /2
Its core the Ehlers-Danlos-Syndrome family might be caused by an inflammatory cascade downstream from a redox imbalance in certain cell types, in effect, a mitochondrial dysfunction. A pre-existing redox imbalance gets further strained by inflammatory stress (like infections)./3
#MECFS never gets easier to accept.
Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.
Each year though, my overall baseline declines.
It feels like dying slowly and painfully. Never knowing when your body will just quit.
1/
Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.
Each year though, my overall baseline declines.
It feels like dying slowly and painfully. Never knowing when your body will just quit.
1/
And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)
In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.
2/
In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.
2/
Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.
By the time you get to 3-4 of these symptoms, it’s debilitating.
Imagine getting to 100-200 daily symptoms.
3/
By the time you get to 3-4 of these symptoms, it’s debilitating.
Imagine getting to 100-200 daily symptoms.
3/
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
My daughter is part of the cohort of (mostly) women whose #hEDS took a severe turn for the worse around puberty, prompting #MECFS, #craniocervicalinstability, #POTS, #Chiari, #tetheredcord and other manifestations. This is important context. 3/
Now that I’ve had a day to think about it, I realize why this comment bothered me so much. This reminded me so much of an experience I had as a highschooler. At a sports physical I checked off that there were times with intense activity that I feel dizzy and near syncope.
My wonderful pediatrician appropriately referred me to cardiology. The doctor did an EKG, listen to my heart and noted very slight murmur, and cleared me to participate in sports. Oh and of course to make sure that I stayed hydrated and was eating salt.
By the time I saw this cardiologist, I had already had several episodes of syncope, usually related to painful events. I also sprained my ankles multiple times by then. So for 20 years I thought I just needed to drink more water and eat more salt.
Woke up to 5K followers! Thank you all so much 🥰
A quick re-introduction:
I’m Nicole, I spent over 10 years in academia researching emotions, concepts, and reasoning.
A few years into my “dream postdoc” at Yale I realized that I didn’t want to be in academia anymore…
1/
A quick re-introduction:
I’m Nicole, I spent over 10 years in academia researching emotions, concepts, and reasoning.
A few years into my “dream postdoc” at Yale I realized that I didn’t want to be in academia anymore…
1/
I’ve battled depression, anxiety, and chronic illness (#hEDS) my whole life and the stress of short-term academic employment away from support systems took its toll on me physically and mentally.
On top of chronic pain and month-long migraines, I had to have a surgery…
2/
On top of chronic pain and month-long migraines, I had to have a surgery…
2/
to remove tumors along my spine.
The academic job market obvi didn’t pause for my recovery and I decided I needed to make a change to prioritize my health.
While recovering from surgery, I built out my network and learned about non-ac jobs through informational interviews.
3/
The academic job market obvi didn’t pause for my recovery and I decided I needed to make a change to prioritize my health.
While recovering from surgery, I built out my network and learned about non-ac jobs through informational interviews.
3/
1/
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.
How do these kids get #PTSD?
Their symptoms are ignored, they are told...
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.
How do these kids get #PTSD?
Their symptoms are ignored, they are told...
2/
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
3/
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
Although I almost always keep my Tweets focused on weather, climate change, and related Earth system events, this thread is going to be a little more personal. May is #EhlersDanlosAwarenessMonth...and I have Ehlers Danlos Syndrome (hypermobility type). #hEDS (1/41)
Before continuing, I want to emphasize that I'm #NotThatKindofDoctor--I'm a physical scientist & science communicator, not a biomedical scientist nor a medical doctor. All the information and reflections in this thread are therefore either personal reflections... (2/41)
...or come from the perspective of a "highly informed patient." I do, however, strive to get the facts right, and offer links to various true experts in the clinical and research fields below. (3/41)
A question for people with #MECFS or #LongCOVID: in your experience, is post-exertional malaise a single phenomenon? Or is it possible there are distinct phenomena that are not being adequately distinguished, impeding understanding? #NEISvoid
With my daughter -- who has #hEDS, #MECFS, #POTS, etc. -- we have observed at least 2 and possibly 3 separate phenomena that all seem to fit the description of #PEM. Let's call them (a) "major crash," (b) "day to day PEM" and (3) "cumulative exertion PEM"
She has had 2 major crashes. These were biphasic events that appear to have caused severe damage lasting years. First major crash (2017) was what made us aware of her illness. She felt very hot in the morning. Then, some time after a long hike, she had whole-body chills/shaking.
EDS Topics, & Comorbidities of EDS, ...& other similar topics likely to be seen in my Twitter: #mEDS #MyopathicEDS #hEDS #MastCellActivationSyndrome #Migranes #Dysautonomia #Erythromelalgia #Dysgraphia #Dyspraxia #Dyslexia
Click on the above tweet to see the connected tweets!
So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassau’s @RuhoyMD that I’m going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. She’s even a certified medical acupuncturist! She now helps lead a neurosurgery practice. 😍😍😍
Ruhoy: “I was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldn’t combine it.”
Someone wrote me an email asking about results for Survey 1/Chapter 1 of the Chronic Illness Survey Adventure! That survey is still open, so I can't respond in detail, but I can tell you a few things about our progress: (1/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
We definitely need more healthy controls. Please ask your healthy friends & relatives to take the survey! Each section is taking most people less than 15 minutes so it's very straightforward and really helps our community. (2/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
Overall, we have over 2K responders who 'crossed the finish line' in Survey 1. That means they completed the survey and meeting inclusion criteria (which were coded into the survey itself), and so on. Thousands more signed up and sat on it (as one does). (3/8) #SC4D
Survey Section 2 of the Chronic Illness Survey Adventure (#SC4D) is now open! Check your email for your invitation!
Didn’t get your invite? Let me help you troubleshoot right here. (1/9)
Didn’t get your invite? Let me help you troubleshoot right here. (1/9)
Did you check spam?
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Are you sure you weren’t ruled out? (1/2)
If you are a healthy control, you may have seen a message saying you don't meet the criteria for HCs. If so, you would not get an invite to Section 2. (3/9)
If you are a healthy control, you may have seen a message saying you don't meet the criteria for HCs. If so, you would not get an invite to Section 2. (3/9)
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Collagen Supplements. *Research to Practical Advice Highlight* It might be time to reconsider taking collagen supplements if you have #hEDS but relevant for #MECFS and #LongCovid which can affect collagen (and hEDS/HSD/JH peeps). I was dx'd hEDS in 2016. 1/5
I never tried collagen supplements as the reigning idea at the time suggested that if your collagen was being made incorrectly, taking supplemental collagen would not be helpful. 2/5
Fast forward to 2019 and recent hEDS research showing that there are major differences between cEDS_vEDS/hEDS and ONE of them relates to this COLLAGEN ISSUE: collagen biosynthesis/processing issues are NOT occurring in hEDS (see mdpi.com/2073-4425/10/8…. 3/5
I see a lot of abled people focusing on single pronged approaches to this pandemic, and I am begging you to consider the chronically ill & immunocompromised who lost more than you can imagine pre-pandemic & just keep losing. Read on:
Background: In 2016 two things happened, my apartment began to leak, unbeknownst to me feeding a years old mold & mycotoxin colony in our ceiling, and I was given a pneumonia vaccine to see if my immune system was working. It wasn't, and I had full-blown pneumonia in 3 days.
I wasn't diagnosed with anything meaningful until 2018, and in between, I nearly lost my ability to walk, I lost my career and ability to leave the toxic home that was slowly killing me, and the cost to my finances just continues to accumulate.
I was harmed by #CBT/GET not bc I was forced into the torture (aka #MEcfs) Clinics but bc lack of education meant #NHS Dx me w/ Depression as cause of #PEM, #BrainFog & debilitating #Fatigue and was then traumatised by #Psychiatrists who told me I was to blame 1/
I was a happy, successful, yoga pant wearing, posh gym attending, green juice drinking, extroverted Californian forced to undergo #CBT w/ stern British #Psychiatrists. I wasn’t Depressed until I met them, temporarily saved by acceptance into @BerkeleyHaas MBS program 2/
MBA life is hectic, exhilarating & inspiring. In remittance, I love people & Academics so got involved in everything. For 2nd year, I got a position teaching undergrad Business. An income meant I moved into nicer apartment, flew business clothes to NYC for Reuters internship 3/
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
