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World Scleroderma Day 2025
As FESCA, we exist to raise awareness of scleroderma as a chronic condition, engage with policymakers to drive change and unite the community of people living with the disease who have unique insight into how it feels.
To do that, however, we must first make sure scleroderma is visible to those who need to see it.
We cannot help those living with scleroderma if they don’t know they have it. They, in turn, cannot understand their disease, if HCPs do not know what they are looking for.
By focusing on awareness and education, we can help make the unseen about scleroderma seen.
- Helping decisionmakers see the unseen, so they address persistent unmet needs.
- Helping HCPs see the unseen, so they recognise symptoms as early as possible.
- Helping caregivers see the unseen, so they can provide the best possible support.
- Helping potential patients to see the unseen, so they can advocate for their health.
- Helping you see the unseen, so you can understand what living with scleroderma is like.
By increasing awareness, we can improve lives.
See the unseen campaign
90% of people living with scleroderma have never heard about the disease before starting to show symptoms.
This is because scleroderma – a disease associated with a myriad of severe cardiovascular, digestive, respiratory and mobility issues – is not on most people’s radar.
Alongside being unknown to the general public, scleroderma is majorly underrepresented in medical education – meaning doctors frequently misdiagnose symptoms before recognising that scleroderma is behind them.
The lack of awareness of scleroderma symptoms is dangerous because it leads to delays in diagnosis that give the disease unwanted time to progress. The longer that someone with scleroderma goes undiagnosed, the more irreversible damage it causes to their body.
FESCA is calling on you to join us in changing this reality in the lead up to World Scleroderma Day on the 29th.
Every week in June, we were you in the shoes of a person with scleroderma – exploring the different symptoms that shape their life to help you ‘See the Unseen’ about the disease.
Our mission was and is to shed light on what living with a rare disease like scleroderma is really like, in hopes of improving education, research and care.
The campaign ‘See the unseen’ encouraged descisionmakers, HCPs, caregivers, future patients and more to follow FESCA to learn more about what life is like with scleroderma, and share the posts with the policy and healthcare community so we can better support patients in their journey!
Photos: Lenka Laňková (web: https://www.lenkalankova.cz/)
See the unseen gallery
