Hiking the Kungsleden Trail for Rare Blood Disorders
I hiked 350 kilometres through Swedish Lapland, across Sápmi, the traditional land of the Sámi people.
A fundraising journey by Eva Straube
All donations are securely processed via Geef.nl and go directly to Stichting Zeldzame Bloedziekten (SZB).
I started walking on August 16 and ended my adventure on September 5, 2026.
RAISED FOR SZB
MY LATEST STORIES
MY BACKGROUND & MOTIVATION
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.
After a long period of little contact, I reached out to a close friend again. That’s when he told me why he had been so distant: he lives with a rare blood disorder called TTP. The effects of the disease had simply left him without enough energy to maintain contact.
Thrombotic Thrombocytopenic Purpura (TTP) is a very rare and potentially life-threatening blood disorder. It can cause severe fatigue as well as neurological and physical complications. People living with TTP also face the uncertainty of unexpected relapses.
What strikes me most about my friend’s story is how difficult it can be to see from the outside what someone with TTP is dealing with. Many people have never heard of TTP, making it difficult for them to understand how profoundly a rare blood disorder can affect someone’s everyday life.
While I was researching the Kungsleden and starting my training, my friend experienced another TTP relapse. Thankfully, we stayed in touch this time, which gave me a much closer insight into the impact the disease has on his life.
With every conversation, I felt more strongly that I wanted to do more than just listen. I sometimes felt powerless. Of course, I could be there for him, but I also wanted to do something.
The Kungsleden had been on my bucket list for a long time. When my friend told me that rare diseases receive far less awareness and funding than many more well-known conditions, I realised that I could use my own challenge to do something that might help him — and others living with rare blood disorders.
That led me to Stichting Zeldzame Bloedziekten (SZB), the Dutch foundation for rare blood disorders. I contacted the foundation to discuss my idea for a fundraiser. They were immediately enthusiastic, and that was the start of our collaboration.
This is why I fell in love with Sweden
On 16 August 2026, I began my Kungsleden adventure. I had originally planned to walk the whole trail, approximately 450 kilometres through Swedish Lapland, across Sápmi, the traditional land of the Sámi people. In the end, I walked 350 kilometres to finish the trail at Saltoluokta, because of a painful shoulder injury.
But the fundraising goal I had set was exceeded. Together, we raised €1,525 for Stichting Zeldzame Bloedziekten.
My original fundraising target was €1,500. I deliberately set a modest target because I’d rather set a realistic goal and exceed it than aim for an unrealistic amount. At the same time, I hoped we could go beyond that target simply by sharing the story within our networks.
The money raised will go to Stichting Zeldzame Bloedziekten and can help support better information and support for people living with rare blood disorders. For example, SZB is working on educational materials about TTP. In the longer term, there is also a need for more research into rare blood disorders.
Raising a large amount of money was never my primary goal. Above all, I hoped this walk would help make rare blood disorders more visible. And if my fundraiser inspired someone else to do something for a person they care about, that would be an especially meaningful outcome for me.
A heartfelt thank you to everyone who has donated and supported this journey. Your generosity helped me reach and exceed my fundraising goal, and I’m incredibly grateful.
The fundraiser is still open, so if you’d like to contribute, you can still donate to Stichting Zeldzame Bloedziekten (SZB). Every donation, large or small, helps support people living with rare blood disorders and contributes to greater awareness.
The hike is now over, but there are still stories to tell. I am taking some time to reflect on the adventure — the places, the people, the challenges, the unexpected moments and everything I experienced along the way. I’ll continue to share these reflections on Substack, adding new stories as they take shape.
Thanks for your continued support!
Eva Straube
Sharing this page helps raise awareness of rare blood disorders and supports my fundraiser too.
IN THE NEWS
Eva Walks was picked up by local media!
Read the article and watch my TV appearance online. Please note that both of these are only available in Dutch, at the moment.
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📺 Interview by Robert-Jan Knook in De Tafel van Knook (Knook's table).
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Live: Streekomroep West-Friesland LIVE broadcast from 11 AM on Saturday, August 15.
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Recording: De Tafel van Knook on YouTube
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Eva Walks was featured in a Swedish national newspaper!
Epoch Times (subscription required to read the full article)
Excerpt: "Eva from the Netherlands also hikes for personal reasons. But that's not what she initially cites as her motivation for spending a month along the Swedish mountain range. A close friend of hers has a rare blood disease, and under the name "Eva Walks" Eva started a fundraiser to support research and spread more knowledge."
WHAT IS TTP?
TTP stands for Thrombotic Thrombocytopenic Purpura. Thrombotic refers to the formation of blood clots, thrombocytopenic means there is a shortage of platelets, and purpura refers to small purple spots on the skin caused by bleeding under the surface.
TTP is a rare blood disorder. In the Netherlands, approximately 30 to 35 people are diagnosed with TTP each year, and around 600 people are currently living with the condition. It most commonly affects adults between the ages of 20 and 45 and is significantly more common in women than in men, with a ratio of approximately 8:1. It can also occur during pregnancy.
Without treatment, acute TTP is a life-threatening medical emergency and can cause serious damage to vital organs such as the heart and brain.
People with TTP have very low levels of platelets, the blood cells responsible for helping blood clot. During a TTP episode, platelets are rapidly used up to form tiny clots throughout the body. As a result, there are too few platelets available to stop normal bleeding effectively.
One of the visible signs of TTP is purpura: tiny purple or blue spots caused by bleeding under the skin. These can become larger over time, developing into extensive bruises or even dark, almost black patches.
This button links to the Dutch website for Stichting Zeldzame Bloedziekten.
For information in English, visit:
https://www.ttpnetwork.org.uk/about-ttp
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GET INVOLVED
This journey may be personal, but its impact belongs to all of us.
There are many ways to get involved. You could:
• help raise awareness
• support the cause
• collaborate on awareness initiatives
• share your expertise or ideas
• support future projects
• or simply reach out and start a conversation
I'd love to hear from you!
