The family father just does not know when it’s going to happen.
The disease changes the arteries of small and medium-sized pulmonary veins throughout the body, but primarily in the brain.
The changes cause oxygen deficiency, which in turn leads to infarction.
Brain infarctions (strokes), among other things, lead to language and memory problems.
How many people have cadasil in Norway are not known. But in the whole world, you only know about about. 500 families with the genetic defect that cause the disease.
Already at the age of 10, you can find changes in the ovaries of the sick, but the symptoms usually only occur at the age of 40-50.
Source: Social Board. see
His father is a nursing patient. Two uncles sit in a wheelchair.
For the infant Tor Atle Olsen (35) from Halden, the same fate seems inevitable. He has inherited the gene defect that leads to countless drips and strokes.
Got a drip at work
First New Year’s Day 2009: Tor Atle Olsen has been on the mountain and celebrated Christmas and New Year together with cohabitant Jeanette Ødegård and their two daughters, Emmeline and Amalie.
He does not feel completely in shape, is relaxed, has headaches and visual disturbances, but still goes to work.
He is the security officer of Securitas, a job he is proficient in. When he reaches the first business to be checked, he will not unlock. No matter how many times he tries, the key does not hit the hole.
He has no control. Then he falls over.
– When I came to myself, I tried to explain the fact that I was tired that I had driven far earlier in the day, but I chose to leave the emergency room. There I left the floor again, and when I was tested later, I “stroked” everything. This led to an ambulance to the hospital in Fredrikstad. A MRI investigation revealed some white spots in the brain that could indicate that I had a drip, says Tor Atle.
Snowflake is one of the signs of stroke , without medical help, the person may be dead hours later.
In the next months, he spends more time at the hospital than at home.
The reason is constant attacks and new drips. As he has experienced six episodes with reduced speech ability, numbness and tingling on his face and hands, he is referred to Ullevål Hospital to have the blood test that will answer what he has begun to have a terrible suspicion of:
That he has cadasil, the very rare but hereditary disease that has made his father a nursing patient and two of the unclears to wheelchair users.
– Gentesten was taken in late November 2009. In February the following year I received the answer. Then I had plenty of time to think about my father and his destiny. He got his first stroke when I was 11 years old. Later, he gained more, and eventually lost both the ability, the speech ability and the large parts of memory. In recent years, he had lived in a nursing home, totally nursing. It was not exactly uplifting thoughts, and I have had better days, “said Tor Atle.
They do not know if Knut survives the summer
When the response from the hospital finally came, it was just as disappointing as he had feared.
He had inherited the defective gene and developed the disease.
– It took time before I swallowed it. There is no cure for this disease, he says quietly.
Good for good
We are home to Tor Atle, cohabitant Jeanette (37) and Emmeline (12) and Amalie (11), in the townhouse they have just moved into, in Halden.
Jeanette has flirted with candles, there is a lot of human warmth too and the smile and laughter are never far away.
“We are pretty good at everyday life,” says Jeanette.
– We are not so demanding, she adds.
A trip out with the boat in the summer. A stroll in the woods. Just being together all four.
– Life is about to be present here and now. No one is given to know what tomorrow will bring. So it’s best to take one day at a time and do not think so far in the future. It’s certainly a way to protect yourself, because should I really take Tor Atle’s disease inside me, I would not have so many good days, “says Jeanette.
Tor Atle has the same setting but also has a body that constantly reminds him of the legacy he is wearing.
– I was a real happy boy, one who laughed a lot and fooled and bullied most of the time. I’m not anymore. Certainly I still have good days, but I’m constantly tired and struggling with the mood too. When the illness gets a mental overtaken, I’m depressed and feeling quite violent. When it is this that characterizes the days, I take a trip out. I would rather not charge the family too much. At the same time, I need to talk about my anxieties and concerns, and all that happens in my body. My doctor sought psychiatric help for me, but I was refused. I was certainly not ill enough, “said Tor Atle, shaking his head.
Torunn lost both daughters
Having a disease that very few, also in health care, know is an additional burden, he believes. That’s why he wants to talk about his illness. He wants more people to get an insight into what cadasil is about.
– When Emmeline was to report about her father’s illness at school, she said he had a lot of pain in his head and he became angry. That’s right, but cadasil is about much more than that, “says Jeanette.
Both her and Tor Atle have been constantly searching for information about the disease.
But on the internet there is not much to find in Norwegian. What they have been able to read is the same as the doctor at Ullevål told when the gene test turned out to be positive.
– Cadasil is a hereditary brain disease characterized by migraines, repeated stroke, mental disorders and a gradual failure of speech ability and memory. The disease is due to a gene defect, and if one of your parents has this refusal, there is a 50 percent risk that you inherit it, says Tor Atle.
Three years before he was diagnosed, he was terribly bothered by repeated migraine attacks.
“It was how it started with me,” he says.
– Did you know that your father’s condition was hereditary?
– It took very many years before he was diagnosed. I was in the 20s and myself had become dad when it happened. But I did not take it inside of me. You do not do that once you’ve started your adulthood, “says Tor Atle, smiling and telling himself that, with the diagnosis of white in front of him, he is completely unable to relate to it.
Heart flicker check in two minutes
Medicines and Lifestyle
– I know that the disease can not be cured, but that the course of illness may be postponed by changing to a healthier lifestyle. I take blood thinning medication and medication that will keep cholesterol down. It’s important and after i started with this I’ve only had a drip, or “tia”, as it is now called. At the same time I have been advised to lose weight, cut out “kiosk food” and eat a lot of fruit and vegetables too. I’m trying and getting better, but probably not good enough. I have worked a lot of night watches in my years as weights, and then there was a lot of food of the kind one would prefer not to eat but, unfortunately, I’m very fond of. There was also a lot of stress in these years. Perhaps that’s why the disease debuted so early with me, he says.
Do not hesitate to work
Tor Atle has not been in permanent employment since he experienced the many battle-like cases in 2009. He tried to work at Securitas again for a while, but did not feel he was hanging out.
– I’m having trouble learning new things and forgetting fast. That I can not work is almost the worst for me today, says Tor Atle.
However, he tries to take a large part of the housework so Jeanette loses it when she returns home from her store job.
– We stand up for each other and make the most of the life we have received. I’m afraid there’s too much about me here at home, but Jeanette assures me that’s not the case. Still, I do not know completely.
Tor Atle takes a break from the words.
Then he says:
– A disease such as cadasil affects not only the sick, it affects the whole family, and therefore everyone must be taken care of.
The girls must decide
– I’ve been both furious and bitter
– Does the family as such receive any kind of help?
– No.. We are left to ourselves. It’s not satisfactory, but it’s ok, says Tor Atle.
He would like to meet the peers of this disease to hear how they deal with everyday life.
– What do the doctors say about your prospects?
– They say that the big stroke will hit me one day, but they do not know when. It may come tomorrow or in several years.
– Do you think much about it?
– I’m good at pushing it away and in my everyday life I think it’s okay. But then it hurts over me with full weight, and then comes the fear, “says Tor Atle.
– We notice it right away when he is depressed. Then we let him be alone, says Jeanette, and receives affirmative nod from Emmeline and Amalie, who has stood still like mice and heard mom and dad tell.
– We have full transparency about the disease, and the girls know that they may have inherited it too. If they want to take a repeat, they will decide when they grow up. The best thing parents can do is prevent them by giving them healthy food and inspiring them to be a lot of physical activity, “said Tor Atle, adding:
– And then, of course, it’s about making the best of life while we have it.
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