Published 2024-02-24 18.12
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full screenVictoria didn’t think she would make it to 25 – but she did. Photo: Anna Tärnhuvud
Victoria Sandsjoe is 25 years old, loves Love is Blind and the drink Hugo Spritz. She lives in an apartment in Karlstad with her boyfriend.
And she lives with the fatal disease ALS.
– My life will probably not be as long as it should be, she says.
A year ago, the then 24-year-old Victoria Sandsjoe was sitting at the kitchen table at home in her apartment in Karlstad. We talked about death and she told me that she didn’t know if she would survive her 25th birthday.
But she did. Her birthday was celebrated during a driving holiday in Europe with boyfriend Markus Asplund, 25.
– We went through Denmark and Germany to Amsterdam. We toured and ate good food. It was a great birthday, she says.
New goal: Turn 30
The wind is cold outside the apartment in central Karlstad, where fluffy snow lies on the ground.
Inside the apartment in the large living room, mother Lotta Svenneling, 53, helps Victoria from the walker to the chair at the white kitchen table.
Victoria tells us that she has stopped working. At the beginning of last year, she was able to work part-time as an economist, but now her body can’t take it anymore.
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fullscreen chevron-rightnextVictoria and Markus have been a couple for nine years.
1 / 2 Photo: PRIVATE
– The disease is very noticeable now. You hear that I speak badly. And I move slowly and need help with most things. Basically everything, she says.
Mamma Lotta fetches a metal straw which she puts in the water glass, which is in front of Victoria on the table.
Victoria slowly leans forward and takes a few sips.
– Mom, can you remove my hair from my face? she then asks.
Lotta carefully pulls away the blonde strands that have settled over Victoria’s cheek.
– I feel a kind of reverse old age. I feel like I want to be older and turn a year old, because then I will have survived this disease for another year. My new goal is to be 30 years old.
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full screen “I feel like I want to get older and turn a year old, because then I’ve survived this disease for another year,” says Victoria. Photo: Anna Tärnhuvud
Victoria <3 Markus
Victoria was diagnosed with ALS in 2019. A disease that affects around 300 Swedes every year. But only three percent of the people who receive the diagnosis are under 40 years of age.
And according to the doctors, Victoria is one of the youngest people in Sweden living with ALS.
Lotta pulls out Victoria’s chair and helps her to the electric wheelchair in the hall. They are going out for a walk before the afternoon sun goes down.
– Do you want mascara before we go out? Lotta says, looking at Victoria, who says yes.
From the bed in the couple’s bedroom, boyfriend Markus overhears the conversation.
– What, wasn’t my make-up from yesterday good enough? he shouts, laughing.
On a white pillow that is on the bedspread it says “Victoria <3 Markus". They have been a couple for nine years now and live in the apartment together.
– We have been together for a very long time, says Markus and it shines about him when he talks about Victoria.
Can draw the ALS card
Markus has had to take more and more responsibility over their home and everyday life since ALS became part of the couple’s life.
– He pulls the heaviest load, but he always does it with a smile. He’s amazing, says Victoria.
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full screenMamma Lotta helps Victoria remove the hair from her face. Photo: Anna Tärnhuvud
She describes their love as strong – but also points out that it can be difficult when someone is both a partner and a personal assistant.
– It’s like in all relationships. You need to have clear communication. But we are still the same couple as we were when we met. We’re actually quite different as people, but I think that’s why it works so well between us.
She continues:
– It is clear that we can argue. Sometimes if we disagree, I may have to pull the ALS card and then Markus has to go to bed. There must still be some benefit to having this disease, laughs Victoria.
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full screenLotta fixes Victoria’s mascara. Photo: Anna Tärnhuvud
Thinking about death – sometimes
Even though ALS is an incurable and fatal disease, Victoria rarely thinks that there will be a time when she is no longer alive.
– I try to be here and now. I think people may have a hard time understanding that I don’t wallow in death. But to be honest, I only think about it sometimes, quite rarely.
But sometimes she talks to her mother or others about a future funeral.
– But I don’t feel like I’m dying, so it doesn’t really feel like I’m in the right position to make any decisions about it.
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full screenLotta has started a fundraiser in her daughter’s name via Hjärnfonden. Photo: Anna Tärnhuvud
Victoria notices more and more symptoms as time goes on.
– As soon as I get used to one foot dragging, the other foot starts to do so too. It’s going slowly, but it’s getting worse all the time. Sometimes it can be scary to go to bed because I don’t know if I will physically be able to do the same things when I wake up.
She is silent for a moment.
– My biggest fear is not being able to talk. I have accepted a life without being able to move.
Collected almost 650,000
With Victoria no longer working, the days are quite long.
She tries to fill the time with reality shows like Love is Blind, party games and now for the first time she is reading the Harry Potter books.
She also hangs out with friends.
– Of course it’s fun to go out or sit at home and drink drinks with my friends. Although there is a little difference in my drunks right now. I get really wobbly after a few glasses – I already have such bad balance because of the disease, she says, smiling.
Mamma Lotta has started a fundraiser in Victoria’s name via the Hjärnfonden. The donated money goes directly to ALS research.
So far, almost SEK 650,000 has been donated.
– The research is very important, it determines my future, says Victoria.
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full screen The doctors have no forecast for how the disease will affect Victoria in the coming years. Photo: Anna Tärnhuvud
The brake medicine available in Sweden can give ALS sufferers a few months longer life.
But Victoria wishes that research into the disease could result in a medicine that could give people with the diagnosis several years longer to live.
– For me, it is important that the money goes straight to the research, not to me. Private individuals have contacted me and wanted to help me so that I might be able to try treatment abroad.
She continues:
– But it doesn’t help anyone else who has ALS or will get ALS in the future. New medications are needed, even if they won’t arrive in my lifetime.
“Don’t feel sorry for me”
ALS can be hereditary, but in Victoria’s case it is not. The doctors do not know why she was affected.
They also have no prognosis for how the disease will develop.
– It is a very nasty disease, precisely because it breaks down all the muscles and causes you to become trapped in your own body. But I have seen a doctor who says that the course of my disease is slower than normal.
She does not know what a slow progress means.
– It can be anything between two to ten years, maybe twenty years. But I don’t feel sorry for myself. There are many who have it worse than I do. My life probably won’t be as long as it should be. But just for that, I can’t stop living.
FACT
IF
ALS stands for amyotrophic lateral sclerosis and is a collective term for several diseases that attack parts of the brain, brainstem and spinal cord. The diseases break down the nerve cells that control the muscles and lead to death.
Around 300 Swedes are diagnosed with ALS each year.
It is not possible to cure the disease, but the person with ALS gets worse all the time. However, there are brake drugs that can cause the disease to develop somewhat more slowly.
Statistics show that the number of patients diagnosed with ALS has increased by two percent annually since the 1990s. However, it is unclear why the curve increases.
There is limited research on young people with ALS. But according to figures, around three percent of ALS patients in Sweden are under the age of 40.
The youngest person diagnosed so far in Sweden is believed to be a 17-year-old.
(Source: 1177, Caroline Ingre, ALS researcher at Karolinska Institutet).
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