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SC#sclerodermawarriors #scleroderma #chronicdisease #fyp
@sclerodermawarriors.mn
#Morpheascleroderma
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THThere are several persistent myths about systemic sclerosis that can delay appropriate evaluation and care.
❓Myth 1: If you have limited cutaneous scleroderma, you do not need to worry about internal organs.
✅Fact: Patients with limited cutaneous disease can still develop lung involvement, including interstitial lung disease, as well as heart and kidney complications. Screening should not be skipped based on skin subtype alone.
❓Myth 2: You must have a positive scleroderma specific antibody to be diagnosed.
✅Fact: While antibodies such as anti-centromere or Scl-70 can support a diagnosis, systemic sclerosis is diagnosed based on a combination of clinical features and laboratory findings. A single antibody test does not make or exclude the diagnosis.
❓Myth 3: Any rheumatologist has extensive experience treating systemic sclerosis.
✅Fact: This is a complex and relatively uncommon disease. Many rheumatologists do not see high volumes of systemic sclerosis unless they trained at or work closely with a specialty center. Experience can meaningfully impact monitoring and management decisions.
❓❓If you live with systemic sclerosis, what other questions do you want me to answer?
#Scleroderma
#SystemicSclerosis
#AutoimmuneDisease
InterstitialLungDisease
@the_holistic_rheumatologist
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RHDiscussing the types of systemic sclerosis #scleroderma #sclerodermawarrior
@rheum2move
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THIf you are living with scleroderma, these questions are very common. Let us walk through them together.
1️⃣Will I pass this on to my children?
It is extremely unlikely. Even identical twins who share the same DNA only have about a 5 percent chance that both will develop scleroderma if one twin has it. That tells us genetics alone do not explain this disease. There are many other environmental and immune factors involved.
2️⃣If my antibody test is negative, does that mean I do not have scleroderma?
No. You can still have scleroderma without a disease specific autoantibody. There are more antibodies identified today than in the past, and sometimes only one or two are checked. Diagnosis is based on the full clinical picture, not one lab result.
3️⃣Can stress trigger flares?
Based on my clinical experience, yes. Overwhelming stress can worsen symptoms, including skin changes, lung symptoms, and gastrointestinal flares. This is why supporting the mind body connection is not optional. It is part of caring for your immune system.
What other questions do you have for me about living with scleroderma?
#Scleroderma
#SystemicSclerosis
#SclerodermaAwareness
#AutoimmuneDisease
@the_holistic_rheumatologist
6.9K
SRA long road to answers: watch Rosa D. (dx 2019) tell her story of navigating her scleroderma diagnosis 🔍
For years, Rosa struggled with alarming symptoms, and like many people living with scleroderma, she was given several misdiagnoses before finally receiving an explanation. Today, Rosa is sharing her experiences to help raise awareness around scleroderma and the challenges that so many people encounter on the path to diagnosis.
At the Scleroderma Research Foundation, we are dedicated to advancing innovative research that can help promote earlier diagnosis, inform better treatments, and ultimately, bring us closer to a world without scleroderma. Learn more about how scleroderma is diagnosed, treatments, and more at the link in the first comment below.
#sclerodermaresearch #scleroderma #srfcure #awareness
@srfcure
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MEScleroderma is a rare autoimmune disease where the body produces too much collagen, causing the skin and sometimes internal organs to harden or tighten. But what people don’t see is the fatigue, pain, circulation issues, and organ complications many warriors face daily. Autoimmune diseases don’t always look the same, but every story deserves awareness, research, and compassion. 💜 #BeyondTheFlare #scleroderma #MsFFSC26 #ConfidenceWithoutConditions #AutoimmuneAwareness
@mesha_mclean
6.3K
GOReversing scleroderma for free! Here is a question from my recent Wellness Wednesday in someone actively reversing her disease and seeing her labs prove it with negative ANA already!
I am live today for more coaching for free, Wednesday 12:30pm pacific time! Follow my page to get notified when I am live!
See you then!
#lupus #autoimmunedisease #scleroderma
@goodbyelupus
380
SCUnderstanding scleroderma starts with the right testing and knowing what each test means for you!
Dr Jessica Gordon shares why diagnostic testing is so important in systemic sclerosis (scleroderma), not just for diagnosis but also for understanding prognosis and monitoring the condition over time.
Here’s a simple breakdown:
• A thorough clinical examination helps identify common signs such as skin thickening, Raynaud’s phenomenon, telangiectasia, and possible internal organ involvement.
• Nailfold capillaroscopy is a specialised imaging test often used by rheumatologists to examine the tiny blood vessels in the fingers.
• Laboratory tests, including full blood counts, metabolic panels, muscle enzymes and inflammatory markers, provide important insight into how the body is functioning.
• ANA testing screens for autoimmune activity and is positive in around 95% of people with scleroderma, helping guide further assessment.
• Emerging technologies, such as immunofluorescence and automated testing methods, are improving the accuracy and specificity of diagnosis.
Each of these tests plays a valuable role in confirming a diagnosis, predicting progression, and supporting personalised treatment plans.
#SclerodermaAwareness #DiagnosticTesting #Scleroderma
@sclerodermavictoria
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SCI fired a long time doctor of mine today. I haven’t been happy for a long time, but didn’t have another option until now. This new provider came in with information and even acknowledged she hasn’t worked with many patients who also have scleroderma. She is willing to communicate with my other doctors to make sure medication is okay for me to take or not. Talking to her made me feel seen, understood, and like a team member I can trust. Everyone deserves this kind of experience with their providers.
#scleroderma #chronicmigraine
@scleroderma.life
1.2K
TH#sclerodermahand #systemicsclerosishands
@the._.handartist
606
EXThere is currently no cure — but early diagnosis, medical management, and proper therapy can significantly improve quality of life.
If you want to learn more about scleroderma, treatment approaches, and patient education resources, visit:
👉 www.liveconferences.com
Education creates awareness. Awareness creates impact.
#SclerodermaAwareness #AutoimmuneDisease #HandTherapy #ChronicIllness #MedicalEducation
@exploringhandtherapy
150
ROIs scleroderma a treatable infection?
The data from the Road Back Foundation patient community says this question must be asked.
In a review of 304 individuals diagnosed with systemic scleroderma who shared their outcomes on the RBF Patient Community Discussion Forum:
• 221 patients (73%) reported remission
• 82 patients (27%) reported noticeable improvement
• Only 2 patients (<1%) reported no improvement
Even more striking — among 97 scleroderma patients who reported being tested for Lyme disease:
• 71 (73%) tested positive
• 24 (25%) tested negative
• Lyme testing is known to produce high false-negative rates
These outcomes were reported by patients using antibiotic protocol therapy, a treatment approach first advanced by rheumatologist Dr. Thomas McPherson Brown and supported by decades of clinical experience.
Yet today, most scleroderma patients are still placed on long-term immune-suppressing drugs — often without being screened for infectious triggers that may be driving the disease process.
Before suppressing the immune system, shouldn’t we rule out infection?
At Road Back Foundation, we believe:
✔️ Scleroderma should be evaluated as a potentially infection-driven illness
✔️ Patients deserve comprehensive screening before irreversible treatment decisions
✔️ First, do no harm must remain the guiding principle of care
📌 These data reflect real-world patient-reported outcomes from one of the largest scleroderma-focused communities in the world.
🔗 Learn more at RoadBack.org
#Scleroderma #SystemicSclerosis #LymeDisease #LymeArthritis #InfectiousAutoimmunity #AntibioticProtocol #APTherapy #AutoimmuneDisease #RareDisease #PatientReportedOutcomes #MedicalFreedom #InformedConsent #ChronicIllness #Misdiagnosis #FunctionalMedicine #IntegrativeMedicine #RoadBackFoundation #FirstDoNoHarm
@road_back_foundation
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