Big names from the (inter)national rock world, such as Cesar Zuiderwijk, Rinus Gerritsen, Robert Jan Stips, The Clarks, Mario Goossens, Fabio Canini and Nicko Christiansen, act selflessly to finance her stem cell operation in Mexico.
“Super cool that all those musical champs come together in this unique line-up. All this to enable my stem cell transplant in Mexico next year. I love music and parties.” Joy Renaud’s elated laugh will often be heard throughout the conversation. Cesar Zuiderwijk (74), father of Joy’s partner Casper (38) and organizer of the concert: “We also want to raise awareness of MS to promote treatment options. George (Kooymans, affected by ALS) made it clear that most people know little about serious illnesses that turn your life upside down.”
Joy notes that MS and ALS show some similarities, but MS often has a slower course and symptoms that vary. In addition, life-enhancing – albeit costly – medication exists for MS. And MS is more widespread. “In the Netherlands, about fifteen hundred people have ALS, where one in a thousand people is affected by MS. A huge group. I started having symptoms when I was eighteen and was diagnosed with relapse remitting MS two years later. After that I was able to hide it for a long time, until the disease revealed itself more firmly. Nowadays I have to be very careful with my energy and I often have complaints such as tingling and headaches.”
Challenges
Relapse remitting MS means that an attack may be followed by recovery, but not 100%. Via via Joy Renaud was approached by other patients whose complaints she did not recognize. “Your MS is not necessarily my MS,” she discovered. “The range of neurological complaints is very wide. I have had a lot of trouble accepting my illness because of the fear of ending up in a wheelchair; that is often the image of MS. In the meantime I know that MS can be invisible: no one notices anything about me, but because of the extreme fatigue everything takes a lot of effort. The fact that I don’t always take that into account is another story, haha.”
Her mercurial, enthusiastic aura illustrates her words. Casper, with a loving look at his girlfriend – the day before they celebrated their eight-year anniversary – comments superfluously: “MS is at odds with Joy’s energetic personality. Just like my father, she is incredibly dynamic, both are always over the top with plans. At six o’clock in the morning she is, so to speak, already eager to start the day. Moreover, she loves dancing and festivals, it sometimes takes me a lot of effort to get her home. Joy does not choose the easiest path for herself.” She interrupts him: “I like challenges, that’s why I’m with you.” Everyone laughs along with the ‘patient’ who likes to move away from her illness.
Rebirth
Unfortunately, she has to pay for her exuberant zest for life the day, sometimes days, after. Casper observes a steady reduction in energy. He does everything he can to protect her as much as possible and sometimes feels compelled to remind friends. “She has to sleep a lot in the afternoon, that’s really a matter of management.” Joy Renaud works as a dietitian in the Central Military Hospital in Utrecht, which is closely connected to the UMC. “Unfortunately I had to switch from full-time to three days a week. In this year with setbacks – I had to undergo three eye operations – they are very kind to me in Utrecht. Unfortunately, operations are extra heavy for an MS patient and in combination with the time-consuming public transport, the three days now turned out to be too much. Unfortunately, I now work half days.”
She resolutely focuses on the treatment. “I look forward. In terms of treatment of MS, Mexico is more advanced than the Netherlands. The health insurance does not reimburse the treatment – from March 6, 2023 in a private clinic in Pueblo – and the associated trajectory of 75,000 euros. The treatment takes a month: my own stem cells are ‘harvested’ via an infusion, after which I undergo four rounds of chemotherapy. When I get my stem cells back, I experience a rebirth, as it were: I start with a new immune system. The chance that the MS will stop is eighty percent. A happy number.”
‘Dining with the stars’ with Cesar Zuiderwijk
Cesar Zuiderwijk: “We are all doing our best for that great goal. It will be a fantastic evening on Sunday 27 November in which we will bring four sets of great music. With ‘Dining with the stars’ as an appetizer for the enthusiasts.”
Benefit concert ‘Joy against MS’, Sunday November 27, 20.30-23.30, Musicon The Hague. For tickets: www.musicon.nl.
For all other benefit initiatives: www.joytegenms.nl/acties-en-events
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