MS
Ana’s illness affects her life in every possible way. “My short-term memory was deteriorating, and I was so terribly tired. If I used a lot of energy, I had to recover from it for three or four days. But you can’t tell that I’m sick, and that often made me feel misunderstood.
I always try to stay positive and make something of it, but lately I haven’t been able to do that very well because I’m so tired. That’s why I have to take a step back. I have been partially rejected and now only work ten hours a week. I find that intense, because I am deteriorating in all respects: physically, but also in terms of salary, job and social life.”
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Medication
After Ana receives her diagnosis, a treatment plan is drawn up for her. “I was given first-line medication. This is medication that is used in the initial phase of the disease and is not yet that heavy. This quickly gave me a lot of hot flashes and stomach aches. I had to wait a long time for an MRI, but it eventually turned out that I had twenty new infections in my brain, and the number was only growing.”
Ana then switches to heavier, second-line medication: chemo pills. “That went well for a while, until my mother passed away in March. Stress is extremely bad for MS, and the impact the death had on my life was a trigger for my disease. In July I had a severe attack and my complaints became much worse.”
Inflammations
The MRI that Ana subsequently receives shows that even more inflammation has appeared in her brain, and that her MS is very active. “My neurologist then referred me to the Amsterdam UMC. There they would investigate whether I was eligible for a stem cell transplant.”
Ana is very happy with that, she has been hoping for the opportunity to undergo a stem cell transplant for some time. “The chance is more than 75% that it is effective, while this is much lower with medication,” she says. “It is a serious and risky procedure, but if it doesn’t work, at least I know I have tried everything.”
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Stem cell transplant
Since 2022, stem cell transplantation has been offered in the Netherlands as a treatment for people with MS. But not all patients are eligible. They must meet quite a few criteria before treatment is considered for them.
According to the Amsterdam UMC, the stem cell transplant is only for patients with RRMS (a form of MS) whose disease is very active, does not respond to the most effective medication and who deteriorates over a short period of time.
Committee
Whether Ana is eligible for a stem cell transplant is decided by a central committee. Her neurologist is also part of this. But unfortunately she is told that she cannot undergo the transplant, despite her worsening complaints.
“They want me to try even more serious medication first,” says Ana. “I actually don’t want that. I will be on the medication that the doctors have now prescribed for me for the rest of my life, and I have heard from other patients that they responded very badly to it.”
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Mexico
Ana sees no other way than to go abroad. “My MS is very active now. That’s why I’m hopefully going to Mexico before the summer to undergo a stem cell transplant. In total this costs me 60,000 euros, while it would be reimbursed if the transplant took place in the Netherlands. To save the money, I set up a crowdfunding campaign.”
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2024-01-21 08:06:49
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