Hiking the Kungsleden Trail for Rare Blood Disorders 

Sometimes people quietly disappear from our lives. We assume they’re busy, have moved on, or that life simply took us in different directions. But sometimes there’s another reason entirely.

A few years ago, after months of silence, I decided to reach out to a close friend one more time. That’s when they told me they had been uncommunicative because they were diagnosed with a rare blood disorder called TTP, and they were just too tired.

In short, Thrombotic Thrombocytopenic Purpura (TTP) is a debilitating and potentially life-threatening disease. Even with the best available treatment, neurological and physical consequences, including fatigue, may persist.

What strikes me most about my friend’s story is that it’s an almost invisible disease that a lot of people don’t understand, making it difficult for them to appreciate how debilitating it really is.

While I was researching the Kungsleden trail and started my training, my friend had barely begun to recover from their latest TTP relapse. But this time, we kept in touch!

The urge to do more than just talk grew stronger with each conversation, though. So, when they told me that rare diseases don’t have as much funding for research as the more well-known diseases, I realised that one way I could help was by organising a fundraiser!

That’s when they told me about the Stichting Zeldzame Bloedziekten (SZB), the foundation for rare blood disorders in the Netherlands. I reached out to the foundation about my idea for a fundraiser. They were immediately enthusiastic and that was the start of our wonderful collaboration.

𝐒𝐨, starting 𝐭𝐡𝐢𝐬 August, I'll walk the entire 450 kilometres of the Kungsleden trail through Swedish Lapland to raise awareness and funds for Stichting Zeldzame Bloedziekten. 

Please note that there is a relatively low target for my fundraiser, because I'd rather exceed a realistic target than set an unrealistic one. I also believe that we can far exceed it simply by sharing this story within our networks.

While raising a large amount of money isn't my primary target, I hope that if this fundraiser does exceed its target, it might inspire someone else to do something similar for someone they care about.

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If you'd like to support the campaign, you can donate, subscribe for updates, or simply share this story. Every contribution helps make rare blood disorders more visible.