Rare disease support in Sweden
For people and families facing conditions few doctors have seen. Talk with people in Sweden who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Sweden circle: Weekly check-in ยท
If you need someone right now
From people who came through it
โto whoever needs this: i was where you are in february. nobody at school had heard of it. today i cooked a proper dinner and enjoyed it. things come back, slower than you'd like but they do.โ
hugosong ยท been through rare diseaseโReading this late at night? I've been there. I've been there. For me it was not that long ago, about a year. A genetic test that took two years, and I couldn't see past it. I can talk about it now without falling apart. It's slow, but it does come back.โ
Saeed M ยท been through rare diseaseโHello from the other side of it. I was right where you are not that long ago, about a year. It was flying to a specialist and I couldn't see past it. Some weeks I don't think about it at all. Bit by bit it comes back. Be gentle with yourself.โ
tide_flame45 ยท been through rare diseaseโReading this late at night? I've been there. I was right where you are two years ago. For me it was a diagnosis code that does not fit the forms. I can talk about it now without falling apart. It comes back slowly, like feeling in your fingers after the cold. Sending love.โ
lovely_quiet ยท been through rare disease