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SCThanking my family for participating in Rare Disease Day yesterday. This was lovely to see @rarediseasedayofficial #showyourstripes #sclerodermaawareness #sclerodermawarrior #helpfindacureforscleroderma
@sclerodermajourney_chelby
#Sclerodermas
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TH#RareDiseaseDay #raredc2026 #themoexperience25 #RareButNotInvisible #sclerodermaawareness #EquityForRare
@themoexperience25
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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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SCToday on Rare Disease Day, we’re talking about something that doesn’t always get the spotlight — policy.
Policy might sound technical or political. But for people living with rare diseases, policy is personal.
It determines:
• How long it takes to get diagnosed
• Whether treatments are covered
• If life-saving medications are affordable
• How quickly new therapies are approved
• Whether patients can access specialists close to home
• How research is funded
For rare diseases like systemic sclerosis, delays and gaps in the system don’t just create inconvenience — they compound disease burden. Diagnostic delays, limited drug access, and inconsistent coverage across provinces are not medical problems alone. They are policy problems.
Good policy means:
✔ Faster diagnoses
✔ Fair and equitable drug access
✔ Investment in research
✔ Support for caregivers
✔ A stronger, more responsive health system
On Rare Disease Day, we honour the strength of our community — and we reaffirm that advocacy matters. Because when policy improves, lives improve.
#RareDiseaseDay #PolicyMatters #HealthEquity #RareDiseaseAdvocacy
@sclerodermacan
✨ #Sclerodermas Entdeckungsleitfaden
Instagram hostet thousands of Beiträge unter #Sclerodermas und schafft damit eines der lebendigsten visuellen Ökosysteme der Plattform.
#Sclerodermas ist derzeit einer der beliebtesten Trends auf Instagram. Mit über thousands of Beiträgen in dieser Kategorie führen Creator wie @sclerodermacan, @sclerodermajourney_chelby and @road_back_foundation mit ihren viralen Inhalten. Durchsuchen Sie diese beliebten Videos anonym auf Pictame.
Was ist in #Sclerodermas im Trend? Die meistgesehenen Reels-Videos und viralen Inhalte sind oben zu sehen.
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Analyse von 4 Reels
💡 Top-Posts erhalten durchschnittlich 439.5 Aufrufe (1.5x über Durchschnitt)
Fokus auf Peak-Stunden (11-13, 19-21 Uhr) und Trend-Formate
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💡 Top-Content erhält Hunderte Aufrufe - fokussieren Sie auf die ersten 3 Sekunden
✍️ Detaillierte Beschreibungen mit Story funktionieren gut - durchschnittliche Länge 809 Zeichen
✨ Viele verifizierte Creator sind aktiv (25%) - studieren Sie deren Content-Stil
📹 Hochwertige vertikale Videos (9:16) funktionieren am besten für #Sclerodermas - gute Beleuchtung und klaren Ton verwenden
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Sclerodermas Entdecken#linear scleroderma awareness month#morphea scleroderma#scleroderma and autoimmune diseases#scleroderma awareness month#scleroderma treatment options 2026#localized scleroderma#scleroderma support groups online#scleroderma symptoms in women