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Hiking the Kungsleden Trail for Rare Blood Disorders
450 kilometres through Swedish Lapland
A fundraising journey by Eva Straube
All donations are securely processed via Geef.nl and go directly to Stichting Zeldzame Bloedziekten (SZB).
I will start walking on August 16.
MY STORY & 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.
Earlier this year, 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 that you often can’t see how ill someone is from the outside. 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, I’ll travel to northern Sweden to walk approximately 450 kilometres of the Kungsleden through Swedish Lapland. Through this challenge, I want to raise awareness of rare blood disorders and raise funds for Stichting Zeldzame Bloedziekten.
I have deliberately set a modest fundraising target of €1,500. I’d rather set a realistic target and exceed it than aim for an unrealistic amount. At the same time, I hope we can far exceed this 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 isn’t my primary goal. Above all, I hope this walk will help make rare blood disorders more visible. And if my fundraiser inspires someone else to do something for a person they care about, that would be an especially meaningful outcome for me.
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.
Thank you for your support and see you on the trail!
Eva Straube
Sharing this page helps raise awareness of rare blood disorders and supports my fundraiser too.
IN THE NEWS
Eva Walks has been picked up by local media!
Read the article and watch my TV appearance either LIVE on Saturday morning between 11 and 11:45 AM or watch it once it has been posted online, which will be 2 to 3 hours after the live broadcast has finished. 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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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
READ MY STORIES
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