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How Jeany Is Keeping Her Fight Against MSA Alive With a QR Code on Her Headstone
A Young Woman with a Story That Touches Your Soul
She was a vibrant young woman, full of life, until everything changed. Jeany Hengeveld (46) from Winterswijk (the Netherlands) is living with a terminal illness and has had to make difficult choices. Yet her story radiates incredible strength.
The Diagnosis That Changed Everything
In 2022, doctors finally discovered what was really wrong with Jeany: MSA. This devastating brain disorder is little-known and often misdiagnosed. MSA stands for Multiple System Atrophy, a progressive brain disease often mistaken for Parkinson’s, but far more aggressive.
Professor Bas Bloem, Professor of Neurology and a world-leading expert on movement disorders, explains:
“Many people with stiffness, slowness, and tremors do indeed have regular Parkinson’s disease. About 10 to 15% have a form of parkinsonism, and these are, without exception, illnesses even worse than Parkinson’s. It progresses faster, responds less well to therapy, causes many more symptoms early on, and people die much sooner from it.”
What MSA Really Means
In the Netherlands, roughly 2,000 people live with MSA, a small community with a story everyone should hear. The disease causes multiple brain systems to atrophy at the same time, leading to rapid decline in speech, movement, and other vital functions.
A Courageous Decision
On August 11, 2025, Jeany shared one of her hardest messages on her blog: at 46, she has chosen euthanasia.
“At the end of April, I decided to apply for euthanasia. I didn’t yet have an exact date in mind, but sometime in the autumn was the idea.”
Telling her loved ones was even harder, especially her mother.
“I was already full of emotions. The emotional reactions of others came on top of that.”
Now on the highest care level (level 5), she spends 90% of her time in bed. She can no longer walk and rarely goes outside. The loss of energy is the hardest part, yet her motivation reaches far beyond herself.
The Harsh Reality of MSA
Although Jeany received the diagnosis in 2022, the symptoms began years earlier. She now lives in De Pelkwijk care home in Winterswijk, fully dependent on help.
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She spends most of the day in bed, has only one functioning vocal cord, and speaks with difficulty.
“As a 45-year-old, I now live in a care home mostly surrounded by the elderly. I can’t just ‘quickly’ do anything anymore, everything takes effort. The loss of energy is the worst part of my disease.”
A Remarkable Plan to Help Even After Death
Jeany has designed her own grave at Moscowa Cemetery in Arnhem, with a nearby bench for her three closest friends. Her headstone will feature a QR code linking to information about MSA and a donation page for research.
Professor Bloem: “Incredible, a QR code on your gravestone. I’ve never heard of that.”
Diapers and Lipstick — A Title That Says It All
The title of her book, Diapers and Lipstick, captures her attitude in four words.
“I may be stuck with those awful diapers, but I put on lipstick every day.”
It’s a perfect metaphor for how she faces her illness, looking reality in the eye without giving up hope or dignity. Her only remaining goal is clear: to hold the printed book in her hands. Despite the disease, she has managed to put her entire journey into words. All proceeds will support biomarker research at Radboudumc.
The Power of Acceptance
“This body, that’s not me. It’s a shell. The real Jeany, the life-loving woman I was, is only in my mind. I can cry about my approaching death one moment, and the next I’m laughing at a good joke.”
The hardest loss?
“No one knows what awaits them, but everyone has some view of the future. Losing that was the worst, no longer being able to dream about later, having no goal. Then the shine disappears from life.”
Scientific Hope: Biomarker Research
MSA is difficult to detect, so people often find out far too late. Biomarkers under investigation at Radboudumc could speed up diagnosis. Jeany wants to spare others the exhausting search she endured, so the proceeds of her book will go to the biomarker study of Professor Bloem’s team.
Following a Legacy of Helping Others
Jeany’s journey recalls another BrightVibes story: Frederik van den Broek, who in 2015 learned he had only months to live due to a brain tumor. Like Jeany, he devoted his remaining energy to helping others, developing the MindApp for future patients. His message was powerful:
“We should not wait with doing what really matters to us. We should do it NOW.”
A Community Comes Together
Friends organized a benefit festival that raised €15,216 for MSA biomarker research. Hundreds attended to enjoy the event and support the cause. Inspired by the ALS Ice Bucket Challenge, Jeany also launched the #KissForMSA challenge to create viral awareness.
Support from an Expert
Professor Bloem: “There are about 2,000 patients in the Netherlands, and one of them is Jeany Hengeveld. She is remarkable, a lovely person. I support Jeany and hope you will support her fundraising too.”
Why This Story Matters
Jeany’s story shows that even in the darkest times, love and hope can prevail.
“The disease is terrible, but it has taught me so much. I want to share that with the world.”
According to Professor Bloem, a cure for MSA is still far off, but research may slow the disease. Learn more in the video below.
How You Can Help
- Donate via her personal page at the Radboud Fund.
- Share her story and the #KissForMSA challenge.
- Sign up for updates about her book Diapers and Lipstick.
- Raise awareness of MSA within your network.
A Message of Courage and Acceptance
Jeany reminds us that true strength isn’t about physical ability but the courage to tell your story. Even now, she keeps helping others, and has even arranged a loving new home for her cat, Ollie.
“Saying goodbye has already begun, and it’s hard, because mentally I’m not ready. But my body is done. Still, I won’t lose heart, when my friends and family are here, we joke all the time.”
Even when the body falters, the mind and heart can leave a lasting impact. Jeany knows she won’t live to see Christmas, but she uses every day left to help others and raise awareness.
Professor Bloem sums it up: “Jeany is standing up for all MSA patients, will you stand with her? Support research for better treatment.”
Learn more or support: visit luiersenlippenstift.nl or donate directly to the Radboud Fund’s biomarker research.
