ChronicCareCompass

Created by @Fwcdeborah, Chronic Care Compass offers tips and tools to make living with a #ChronicIllness a little easier. #EhlersDanlos #MECFS #Spoonie #POTS

[Dysautonomia Intl. @Dysautonomia]

People with #dysautonomia often have multiple medical diagnoses. Figuring out which diagnosis is causing your symptoms can be tricky! #SillySaturday

[Deborah Lundin @fwcdeborah]

Question for all my fellow #Spoonies Staying #positive is often hard with #chronicillness. What is your favorite #quote to keep you motivated? #EDS #MECFS #Sjogrens #Dysautonomia #POTS #ChiariMalformation #LongCOVID

[OpenEvidence @EvidenceOpen]

Ask an AI: "What is the prevalence of Long COVID in children?"

[American Syringomyelia & Chiari Alliance Project @ASAPChiariSyrin]

Did you know? CMI is three times more likely to be identified in adult women than in men.

#chiari #chiarimalformation #women #womensday #internationalwomensday #womensupportingwomen

[Karen Lubell @karenlubell]

And we are very excited you have included #mespine conditions like #cci, #chiari, and #otc. Thank you Dr. Azola.

[MariposaWarrior @LunaRivera96]

Chronic Illness Looks Different On Everybody
#chronicillness #SLE #lupus #fibromyalgia #lymedisease #MultipleSclerosis #epilepsy #rheumatoidarthritis #CRPS #Chiari #Diabetes #sjogrens #sarcodosis #chronicfatigue

[Firstdrawer @wonderingperson]

I mean I got a bunch of scars. However I know a lot of people suffer from invisible illnesses and I know the feeling of "well you look fine" stay strong, if they don't believe in you I do.
#Chiari #ChiariMalformation

[The Ehlers-Danlos Society @TheEDSociety]

🌟 Today marks #InternationalWomensDay! 🌟 Today, we celebrate the strength, resilience, and achievements of women around the world.

At The Ehlers-Danlos Society, we're proud to stand with women who are impacted by the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This year's theme of #InspireInclusion resonates deeply with us as we reflect on the unique challenges faced by women in healthcare.

Gender bias in healthcare is a critical issue that continues to impact women worldwide. 🌍💔

Research has consistently shown that gender bias leads to significant delays in diagnosis, misdiagnosis, and even fatal outcomes for women. From dismissing symptoms as "anxiety" to attributing pain to psychological causes, these biases have far-reaching consequences on the quality of care women receive.

The result? Women often face worse healthcare outcomes, contributing to greater health inequity. It's unacceptable that gender bias persists in medical settings, denying women the timely and accurate care they deserve.

On this International Women's Day, let's amplify the voices of women who have been silenced and advocate for equitable and compassionate care for all. Together, we can drive meaningful change and ensure that every woman's concerns are heard, validated, and treated with the dignity and respect they deserve. 💪💙

#IWD2024 #EhlersDanlossyndrome #Hypermobility #HypermobilitySpectrumDisorder #WomenInHealthcare #GenderEquality #InspireInclusion #Healthcare #HealthcareBias

[Standing Up to POTS @POTSActivist]

A # SUTP-funded study found that 79% of those with Long #COVID met the diagnostic criteria for #POTS. Finding treatment options that help Long COVD patients may help many #POTS patients as well. https://t.co/ZHOs4RFQpB #dysautonomia #potsawareness

[Dysautonomia Intl. @Dysautonomia]

Nearly 150 years later and many doctors are still diagnosing “hysteria” in women under more palatable modern names, failing to diagnose and treat their actual diagnoses - POTS, MS, Sjogren’s, lupus, cancer, neuropathy, etc. - all still being misdiagnosed as psych issues in 2024.

[Laurent ARNAUD @Lupusreference]

✅ Today the 29th of February is RARE DISEASE DAY. #LUPUS, Sjogren, scleroderma, MCTD, inflammatory myopathies, vasculitis, etc. Together, MILLIONS of people worldwide 🌍🌎🌏 are suffering from rare #autoimmune diseases. Let's raise #awareness ⬇️ and support those who need it 👍

[ChronicCareCompass @ChronicCompass1]

Do you live with a #ChronicIllness? What self-care activities and strategies do you find most beneficial? #EDS #autoimmune #MECFS #LongCOVID #Sjogrens #Spoonie

[ChronicCareCompass @ChronicCompass1]

Experiencing #grief is not limited to the loss of a loved one. Grieving your old self is common after a #chronicillness diagnosis. The Chronic Illness and Grief #Journal helps encourage self-reflection and break down grief into more manageable parts. https://t.co/IE1qgiAwei

[Eileen Davidson - Rheumatoid Arthritis Advocate @chroniceileen]

Nine years ago I realized there was something seriously wrong with me.

I was constantly tired, no matter how much coffee or water I drank or the healthy foods I ate. No matter how many hours of sleep I got or how many hours of work I reduced. Resting for too long would cause pain all over.

I would slur my words, forget mid sentence what I was saying, I wasn’t drunk.

I was always in pain, especially in my hands, wrists, elbows, shoulders, neck, hips, knees, ankles and feet. Someone sitting next to me on the bus was painful. Carrying my 2 year old son was painful. Strapping him into a car seat or his stroller was difficult because I just did not have the hand strength.

I could barely handle grocery shopping or walking 6 minutes to the train station. I was exhausted and it hurt.

I had some of the worst mental health of my life. In fact I constantly thought of suicide because the amount of pain I was in was so great and I did not know why. I also blamed myself for not being able to shake off the tiredness or the forgetfulness.

I was constantly catching a cold that wouldn’t go away. What would normally take a week to get over would take 4-5 weeks to recover from.

I could barely function or explain what was going on with me.

I had just celebrated my 29th birthday. I couldn’t do my job anymore. I thought it was hormones from having a child but after two years those hormones should have gone away, not have gotten worse. I thought it was all in my head. I thought I was crazy.

Then I made an appointment to ask my family physician for a rheumatoid arthritis blood test after a coworker suggested it to me. Due to my family history of arthritis, things started to click. What I was experiencing was not normal and it was not in my head. I was being broken down by a serious autoimmune disease. Nine years ago I was diagnosed with rheumatoid arthritis.
February 2nd is Rheumatoid Arthritis Awareness Day. A day to observe this serious autoimmune disease. Today is important to me because maybe I would have gotten my diagnosis sooner if I had known about the symptoms and that someone my age could get a form of arthritis. I hope those that are experiencing similar symptoms to me will get the help they need. Rheumatoid arthritis is a serious disease and it needs to be taken seriously with early and effective treatment.

This day important to me because I have witnessed and lived the serious problems that can arise from the disease. My aunt lived with RA many years prior to my diagnosis. I do not have any memories of her walking. She was in a wheelchair, in serious pain. I saw my family dismiss her as dramatic. She passed away the same week I was diagnosed with RA due to complications that come from living with RA. Heart disease is part of RA and one of the most common causes of death for RA patients.

Since my diagnosis I have become an advocate for RA with a passion for research. I have had the opportunity to learn a lot about my disease, which is fascinating but also terrifying as RA is a very serious disease. Rheumatoid arthritis is serious because:

RA is a systemic inflammatory or autoimmune disease that not only attacks our joints but our organs like the heart, lung, eyes, kidneys, skin and more. RA is more like MS and lupus than it is osteoarthritis, which it is commonly mistaken for.

RA increases my risk for other serious or life-threatening illnesses. It is well-established that RA increases your risk for developing a variety of other health conditions such as cardiovascular disease, certain types of cancers, osteoporosis, lung disease, mental health conditions like anxiety and depression, and more.

RA significantly impacts quality of life with debilitating chronic symptoms that have no cure.
RA and RA medications make us moderately to severely immunosuppressed, or at high risk for infections. When you’re immunocompromised, any sort of infection — from the common cold to COVID-19 — instills fear. Even if an illness is relatively mild, you worry that it can make your underlying disease worse, especially if you temporarily pause your immunosuppressant medication.

Please share to help me create awareness and support for the rheumatoid arthritis community today. These words are only a glimpse into the seriousness of RA.

#RheumDay, #TheRealRD #RheumAwarenessDay #RheumatoidArthritisAwareness #RheumatoidArthritisAwarenessDay

[💜😷 Mark Dixon @markdixontweets]

Hey there #COVIDisNotOver friends. My wife @mchristinebd and I put our heads together and made a flier about basic COVID-19 precautions - particularly for small events/gatherings. All the icons and entire flier are CC0/public domain/free to use: https://t.co/mt1in24cHQ 🧵1/2

[Diana Berrent Nadia @dianaberrent]

If COVID damages the endothelial lining of the vasculature system why aren't we trying Viagra as a way of increasing blood flow to repair the damage?

P.s. I've been asking this same question for three and a half years

#MedTwitter #LongCovid

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

I'm very excited to announce that our survey data have now been published on a preprint:
Characterising long COVID-like COVID-19 vaccine reactions
https://t.co/ltWgSFlhLZ

I've already summarised key findings in the thread below 👇🏻
#postvac #vaccineinjuries #medtwitter

[Standing Up to POTS @POTSActivist]

Living with chronic illness is complex, and it can be easy to get stuck in a difficult place. It's important to realize that tomorrow is a new day, and new adventures (however small) await each of us. We hope that your next chapter brings peace and joy. #SUTP #POTS #spoonie

[Tom Kindlon @TomKindlon]

I heard previously that this Nancy Klimas study in South Florida has had recruitment difficulty.

So it would be good if it was highlighted widely

Links in image:
https://t.co/4GL7b0AEGI
https://t.co/7Vo0WlLV0n

#LongCovid #PwLC #COVID19 #COVID #MEcfs #CFS #PwME