Did you know that a tick bite can change your life from one day to the next? Unfortunately, Brent Ghijs’ sister, Tiana, can testify to that.
Tiana’s life has been dominated by Lyme disease for the last three years. Chronic fatigue, ailments and a hefty medical bill make Lyme disease a cruel disease.
That’s why this year, Tiana is organising a walk and run in Steenhuize-Wijnhuize for Lopen voor Lyme, a walking and running event held by the Lymefonds (Dutch Lyme Disease Fund) to help patients pay for their medical bills.
And it goes without saying that our colleague Brent wants to help his sister. So, he’s looking for sponsors or supporters to walk or run with him on 9 April. It’s a very heartwarming story!
Brent, would you briefly introduce yourself?
Brent: “Hello, I’m Brent Ghijs. I’m 26 years old and I’ve recently moved to Munkzwalm with my girlfriend. I work as a Fibre Engineer Consultant for Pauwels Consulting.”
Nice! How did you come to work at Pauwels Consulting?
Brent: “I tried a lot of courses at university, from ICT to health and well-being sciences, and eventually graduated as an industrial electrician.
In May 2021, Daniel from Pauwels Consulting asked me if I’d be interested in becoming a Fibre Engineer Consultant. And I’ve been working at Pauwels Consulting for almost a year now.”
And we’re very happy about that! What does a Fibre Engineer actually do?
Brent: “I take care of troubleshooting errors on the customer’s fibre network. I go on site if there are any network faults or outages, and once I’ve located the problem, I send subcontractors to fix it.
I also measure fibre-optic cables in head-end stations around Antwerp, Limburg and Brussels, and I do rack checks so work on the customer’s network can run smoothly.”
Interesting. Brent, we recently heard a great story about you. You’re organising a walk and run for the benefit of the Dutch Lyme Disease Fund. Can you tell us more about that?
Brent: “Well, my sister Tiana has had chronic Lyme disease for three years now. In that time, the disease has affected her body in its entirety. Since Tiana became ill, she hasn’t been the same. She lost her joy and enthusiasm for life, and she’s no longer the person she used to be. She lost her job due to the illness, so she also spends much less time out of the house.
At the same time, my sister is very strong-willed and, despite the fatigue and many pains and ailments, she’s still fighting the disease. As her big brother, I can’t let her do that alone. That’s why I’m supporting her ‘Lopen voor Lyme’ campaign.”
Why is Lopen voor Lyme needed?
Brent: “Treatment for chronic Lyme disease is different for each patient, which makes everything rather complex and expensive. The health insurance fund reimburses part of the costs for treatment for many illnesses, but in Belgium chronic Lyme disease is not recognised as a chronic illness.
In the past, Lyme disease was thought to be ‘just’ an acute infection that could be resolved with a four-week course of antibiotics. These treatment guidelines have never been updated, which means that the health insurance fund doesn’t help to cover the costs of treatment.
That’s why the Dutch Lyme Disease Fund created Lopen voor Lyme. Patients can register a team of runners and walkers for this event, and that team then raises money for both the patient and the charity.”
Splendid, Brent. Let’s take a step back. You said your sister lost her joy for life. How does chronic Lyme disease affect your sister’s life?
Brent: “The disease has a huge, but also partly invisible impact on her life and on those around her. Tiana has virtually no immune system left, and several of her organs have been damaged. The disease affects her eyes, digestive system, muscles, joints, bladder, lungs, heart and even her brain.
As a result, she now has problems concentrating and can’t sit still or stand up for long, for example. At the same time, there have been days and months when she’s slept 22 hours a day and didn’t have the strength to get out of bed.
Unfortunately, outsiders can barely see how much the disease affects her as she doesn’t look ill. What’s more, Tiana is still trying to hide her symptoms from the outside world. Consequently, she often pushes herself beyond her own limits and has to pay for it afterwards.”
That’s really tough. Especially for someone so young!
Brent: “That’s right. The disease has a severe mental and emotional impact on her life. It took three years for my sister to get the correct diagnosis, and that hellish search has left deep scars. Tiana often had to deal with ‘medical gaslighting’, where doctors sweep patients’ complaints under the carpet. Nobody recognised Tiana’s symptoms, so she was often told that there was nothing physically wrong with her. One doctor even suggested it was basically all in her head.
At the moment, Tiana sees her friends and peers moving in together, getting married or having children. She’s forced to watch her young life pass her by. It’s also a grieving process: Tiana mourns for who she was and for the things she can no longer do. I hope that after the treatment, she’ll be back to normal and be able to continue her life as any of us should be able to.”
And that’s why you’re helping to organise the walk. How did you come up with that particular idea, Brent?
Brent: “My sister follows the Dutch Lyme Disease Association (Lymevereniging) and the Dutch Lyme Disease Fund closely to stay up to date on the latest breakthroughs and to get to know fellow sufferers. The Dutch Lyme Disease Fund organises an edition of Lopen voor Lyme every two years, and Belgians can also take part for the first time this year.
That’s convenient, because Tiana’s treatment is due to start in April. My sister signed up as soon as she heard about it. And I’d love to help her.”
Brent: “Lopen voor Lyme will take place on 9 April 2022. We’ll start at the ‘t Berghof café (Bergestraat 1) in Steenhuize-Wijnhuize between 12pm and 2pm. You can sign up at https://www.lopenvoorlyme.nl/brent-ghijs-team-tiana.
It only costs €5 to sign up, but you can choose to donate more if you wish. And if you can’t make it on 9 April, you can simply make a donation.”
And the money raised goes entirely to your sister?
Brent: “75% of the money raised goes directly to Tiana. The money will be used to pay for her treatment, which takes about a year and will quickly reach €12,000. That’s a huge sum, especially for someone who can’t work due to their illness.
The other 25% goes to the Dutch Lyme Disease Fund to fund research and prevention campaigns for the disease. Hopefully, we can make sure that future patients won’t have to suffer in the same way as Tiana.”
Can you tell us a bit more about the event itself?
Brent: “The walk or run is definitely worth it. Tiana and I have set a course in the cosy town of Steenhuize, where we grew up. It’s a farming village with lots of fields, so it will be a nice walk and run through nature and the neighbouring villages.
We walk or run together. You can walk or run quickly if you wish, but what’s important is that we want to send a message to the government that Lyme disease is a serious illness that wreaks havoc on your life.
We’ll also try to separate those taking part out a bit, however, to make sure the event is Covid-secure. That’s why we’ve chosen a free start between 12pm and 2pm.
Afterwards, there will also be some live music and a tombola, where people can enjoy a drink and some entertainment in ‘t Berghof, near the start and finish line.”
Sounds good. Who can take part?
Brent: “Everyone! Young or old, it doesn’t matter! The walk or run is 10 kilometres, but you can adjust your route if that’s too far or not far enough. It’s the taking part that counts, and the message we’re sending is even more important!”
Brent, thank you for sharing your story with us. Do you have a final message for everyone?
Brent: “First and foremost, I’d like to thank Pauwels Consulting for their contribution and support in this project! Pauwels Consulting promised a family atmosphere and working environment when I started, and now they’re really putting their money where their mouth is. I’d like to say a big thank you to all of you who helped make this happen!
I’d also like to thank everyone who supports me and my sister, both with sponsorship and by coming along to walk or run. Each contribution is one step closer to my sister’s healing process, and is another step forwards in treatment.
And finally, I’d also ask everyone to enjoy life each and every day! For most of us, getting up in the morning to go to work, playing sport or doing other things is a given, but that’s not the case for everyone.”
Thank you, Brent. We wish you and Tiana every success with the event and the treatment!
You'd also like to support Tiana and Brent?
Visit https://www.lopenvoorlyme.nl/brent-ghijs-team-tiana to register for the running and walking event or make a donation. Pauwels Consulting is a warm-hearted family. We're grateful for everyone's efforts!