Jan Jorgensen suffers from rare disease – and his children have inherited the

The spot was the starting point for a difficult and tough course, which he is yet struggling with, but the worst is, however, that he has given the rare disease

Jan Jorgensen suffers from rare disease – and his children have inherited the

The spot was the starting point for a difficult and tough course, which he is yet struggling with, but the worst is, however, that he has given the rare disease on to his children.

Jan Jorgensen was around 12-13 years old, when he first noticed the stain on his arm and thought that it looked strange.

to begin with he thought that it was a wound of some kind, but since it has not vanished or became less, decided he and his family, that it should be investigated.

At the doctor tried to freeze the stain away, but it didn't work.

Then there was taken a biopsy of it, and the result revealed that there was talk about skin cancer. But it turned out that there was more than that.

the Doctor began, namely, to examine the reasons why Jan Jorgensen had scored the stain, what it could be, arising out of, and in one of his books he came across a rare disease called Gorlins Syndrome, as it is estimated that there are only about 20 known cases of in Denmark.

"I took a genetic testing, and quite rightly matched it on the disease," explains the 42-year-old Jan Jorgensen from Tinghøj.

the Syndrome is a congenital genetic disease, giving the increased risk of skin cancer in the face and the body, since the body's cells are missing their natural ability to inhibit the svulstdannelser.

in Addition, it can among other things lead to benign cysts in the jaw, which presses and pushes on the teeth, different congenital anomalies and increased risk of heart disease.

Special hudkræften fighting Jan Jorgensen, who previously stood forward with his story in the JydskeVestkysten, with.

At the moment, he has about 40 spots with the skin cancer alone, on her back. In addition, he has about 20-25 spots in the scalp and so the fix elsewhere on the body.

"I have heard that I am one of those in Denmark who is most affected by it here, and it is hudkræften, which is the worst for me. And so it is, that I know, I have transferred it to my kids," he explains.

Together with his wife Lola, Jan Jørgensen two children. His son Casper came into the world 11 years ago, while in the nine years had to fight, before it finally managed to get her daughter Cecile, who now is two years.

Jan and his wife knew that there was a risk that their children would also get the disease, and after birth they were both tested for it. Both children have been diagnosed, that they have it in the genes and, therefore, will break out at a time. With Casper it's already starting.

"I think it is terrible that they have gotten it. I didn't have any, then I got found, and I felt that I stood very much alone with it," said Jan Jørgensen, and continues:

"So, when we decided to have children, we tried enough somewhere to fool us, that they would at least have each other, if they got it."

No one knows how bad his kids are going to experience the disease yet.

his Son, however, has already been removed the first spot from the scalp.

Jan Jørgensen's hope is that children should not through the same as him.

they don't have to feel like a pawn between the regions, to find a treatment that is painless, and that they don't get a heart disease, which he suffered, and which had important consequences for him.

He was about 18 years old when he began to get so strong headaches that he practically nothing could be in addition to sleep.

One night when the parents woke him on the couch, he could not stand on his legs.

"My left leg was completely limp, and my left arm could not hold anything," explains Jan Jorgensen.

At the hospital he got on the operating table with the same, and the doctors found out that the severe headaches had occurred because he had inflammation in the brain.

Then he had started with a longer rehabilitation, and all in all it took about a year and a half, before he was completely on his feet again.

It also meant that he had to abandon his training as upholsterer.

"I tried to get started again afterwards, but I could just as well give up. My hands shook, so this having to have a thread through a needle, that I could not simply," explains Jan Jorgensen, who today works as a replacement of renovationsfirmaet Marius Pedersen.

the Consequences of hjernehindebetændelsen he can even notice. Even here, more than 23 years later, shaking his hands still.

"It was fucking a hard place," he says, and adds:

"And what I really hope is not going to happen for my children. It is really mentally hard."

over the years he has gotten rid of hundreds of spots with skin cancer from his body. Both with radiation therapy, phototherapy, and to get them cut away. It all has taken its toll.

the Radiation therapy, as he got in the scalp, did that he lost the hair in large spots. Phototherapy, where kræftpletterne more or less burned away, was to last for painful, as the treatment was repeated again and again in the same places.

The pills he got with the chemo, he got at last so severe side effects of nausea, weight loss, muscle cramps, hair loss and fatigue, that he could not continue to take them.

And then there are the scars from the times when it has been necessary to cut the spots away.

the Latter is right now the only option he has to get removed the stains, in addition to a single thing.

His last hope is an attempt at Bispebjerg Hospital, as he has come in, where he must smear a chemo in cream form on the spots in his face, then they disappear. However, there is no guarantee that it works – partly because half of those who are in the trial receive a placebo cream.

"I sincerely hope that the cream will be a success, and that it will be able to be used for the rest of the body also. Also for my children. For the is easy and painless and does not scar," explains Jan.

He does not believe that there will be found a treatment, that can go in and completely heal him and others with the disease.

"Not in my time at least, but I can hope that it can happen in my children's," he says, and concludes:

"For it to be constantly thinking about whether one's children must go through the same, it does fucking hurt."

Updated Date: 23 December 2019, 19:00

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