Federation of European Scleroderma Associations

⏱️ Up to 80% of people living with #Scleroderma are women, yet gender inequalities in health still affect how quickly symptoms are recognised, diagnosed, and treated. This week, the European Parliament FEMM Committee adopted its position on gender inequalities in health, acknowledging that health systems and research have long failed to fully reflect women’s realities. FESCA welcomes this important initiative and the renewed political focus on closing these gaps. For people living with scleroderma, gender bias can mean delayed diagnosis, limited research, and care pathways that don’t meet patients’ needs. That’s why FESCA is committed to ensuring scleroderma is part of this wider policy conversation. On this #WorldSclerodermaDay, FESCA is calling on you to #HearTheUnheard and help raise awareness of scleroderma’s red flags 👇 🔄 Reshare this post to help raise awareness of gender inequalities in health! A special thank you to our members for sharing their stories: 🌻 Annelise Rønnow 🌻 Benjamin Lustenberger 🌻 Edith Brown 🌻 Karin Huzell Granath 🌻 Stephanie Munoz #PatientVoice #Representation #Advocacy

People with #scleroderma face critical delays in diagnosis, often stemming from a lack of awareness around early symptoms. Head our page to hear Stephanie’s story and learn more about her experience getting diagnosed with a rare disease she never knew existed. #HearTheUnheard 🌻

Do Benjamin’s symptoms sound familiar? If one of your patients is presenting with any of the things he’s describing, please keep them on your radar. 🚩 #Scleroderma is a multisystem condition that can show up in a variety of ways – often starting with sore or swollen fingers, Raynaud’s syndrome, acid reflux or heartburn. If you notice a combination of these hallmark signs, we encourage you to consider scleroderma (which can be investigated via ANA testing, nailfold capillaroscopy, and organ function assessment). We recognise that #RareDiseases like scleroderma can be challenging to spot in general practice and underrepresented in medical training. However, it’s better to proactively investigate scleroderma and rule it out than to risk overlooking a condition where #EarlyDiagnosis makes all the difference. 💛 June is Scleroderma Awareness Month, so every week leading up to #WorldSclerodermaDay (29/06), we’ll be sharing powerful first-hand testimonies from patients. Follow along to #HearTheUnheard! 🌻 #PatientAdvocacy #Representation #PatientVoices

People with #scleroderma face critical delays in diagnosis, often stemming from a lack of awareness around early symptoms. Head our page to hear Annelise’s story and learn more about her experience getting diagnosed with a rare disease she never knew existed. #HearTheUnheard 🌻

Do Stephanie’s symptoms sound familiar? If one of your patients is presenting with any of the things she’s describing, please keep them on your radar. 🚩 #Scleroderma is a multisystem condition that can show up in a variety of ways – often starting with sore or swollen fingers, Raynaud’s syndrome, acid reflux or heartburn. If you notice a combination of these hallmark signs, we encourage you to consider scleroderma (which can be investigated via ANA testing, nailfold capillaroscopy, and organ function assessment). We recognise that #RareDiseases like scleroderma can be challenging to spot in general practice and underrepresented in medical training. However, it’s better to proactively investigate scleroderma and rule it out than to risk overlooking a condition where #EarlyDiagnosis makes all the difference. 💛 June is Scleroderma Awareness Month, so every week leading up to #WorldSclerodermaDay (29/06), we’ll be sharing powerful first-hand testimonies from patients. Follow along to #HearTheUnheard! 🌻 #PatientAdvocacy #Representation #PatientVoices

Do Annelise’s symptoms sound familiar? If one of your patients is presenting with any of the things she’s describing, please keep them on your radar. 🚩 #Scleroderma is a multisystem condition that can show up in a variety of ways – often starting with sore or swollen fingers, Raynaud’s syndrome, acid reflux or heartburn. If you notice a combination of these hallmark signs, we encourage you to consider scleroderma (which can be investigated via ANA testing, nailfold capillaroscopy, and organ function assessment). We recognise that #RareDiseases like scleroderma can be challenging to spot in general practice and underrepresented in medical training. However, it’s better to proactively investigate scleroderma and rule it out than to risk overlooking a condition where #EarlyDiagnosis makes all the difference. 💛 June is Scleroderma Awareness Month, so every week leading up to #WorldSclerodermaDay (29/06), we’ll be sharing powerful first-hand testimonies from patients. Follow along to #HearTheUnheard! 🌻 #PatientAdvocacy #Representation #PatientVoices