When Linda Bjørgan (39) from Rørvik in Trøndelag was three years old, she was diagnosed with the rare disease Hereditary Angioneurotic Edema (HAE). It is a serious blood disease that causes swelling in the skin, mucous membranes, mouth and stomach and intestinal tracts. Patients may have seizures with dizziness and severe pain.
Linda Bjørgan experiences several such a week. In the worst case, she can die in an acute attack, because swelling in the mouth can cause the airways to be blocked. Large parts of the 39-year-old’s family are affected by the rare disease, but none of them are affected as badly as her.
– I was three years old when the disease was discovered. It was during an acute attack with swelling in the face, mouth and throat. I was admitted as an emergency at Bodø hospital. There was a specialist and researcher on the diagnosis who knew the family and found out that I too had HAE, she tells Dagbladet.
Klikk.no mentioned the matter first.
– Not a dry eye in the church
In and out of hospital
The disease is caused by a reduced concentration of the protein C1 esterase inhibitor (C1-INH). If there is too little of this protein, a fluid can leak from the blood vessels into the tissue, which can lead to swelling.
In recent months, Linda Bjørgan’s illness has worsened. The attacks have become more frequent and she has become so ill that she has been in and out of hospital.
Last Saturday at the latest, she had a serious seizure.
IN HOSPITAL: Bjørgan has many hospital stays behind him. Photo: Private
sea view
– Then things started to go wrong again. I had congestion all over my body and passed out several times. I was terribly ill, and it took eight packs of Berinert to bring down the swelling. You panic, but still you just have to keep calm, says the 39-year-old.
Berinert 500 IU is a medicine that supplies Bjørgan with the protein she lacks. The medication comes from donors and is injected with syringes.
– The protein I am missing is taken from the donors. When I add this protein the swelling should go down, but since April it has been difficult to keep the disease in check. It is getting out of control, says the mother of four to Dagbladet.
Adele (4) only talks with her eyes
– Terrified of respirators
Linda Bjørgan says she was the first HAE patient in Norway to have a portal vein operated on. It is an artificial, open vein into which syringes and needles can be inserted – and which is usually only given to cancer patients.
– They struggle with taking blood samples and putting needles in me. When I have acute attacks, it’s also not time to start stabbing.
Recently, however, the venous port has not worked as it should, which means that Bjørgan instead has to stab himself up to 20 times in the arm to find a vein when the seizures occur. Thus, it takes longer for the protein to enter her blood and the swelling to go down.
SWELLING: The rare disease causes Bjørgan’s body to swell. Photo: Private
sea view
Her old venous port was replaced in May, because it was old. But her needles didn’t fit the new IVF, and only after two months did she get the right needles.
By then, however, the new vein had grown back because it had not been in use. Now Bjørgan is terrified of ending up on a ventilator in the event of a serious attack.
– It happened when I was 16 years old. Then my tongue and throat swelled up. Then it becomes difficult to breathe. You suffocate, she says.
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– Terrified
Because the disease is so rare, there is little knowledge about it in Norwegian hospitals, which Bjørgan believes has gone beyond the treatment she has received. She experiences little help from the Norwegian healthcare system. Today, she is followed up by a German doctor with in-depth knowledge of HAE. They regularly talk together on Teams.
– He has said that I am welcome to Germany to be examined. But I don’t get it covered by the state. A few days ago some friends created a splice. But I dare not hope for anything.
MEDICINES: The 39-year-old uses large doses of Berinert. Photo: Private
sea view
What she hopes for is that the medicine Takhzyro will soon be approved in Norway, even though she became deathly ill and flew straight to hospital the last time she tested a similar medicine.
Over the years, she has spent a lot of time learning how to handle the situation when seizures occur.
– I have read a lot and learned good breathing techniques to relax. If you stress yourself out, it gets worse. And it has been a process to stay calm when you are actually terrified, she says.
John (72) was subjected to blind violence
Daughter hit
Since the disease is hereditary, there are many in Bjørgan’s family who have the same diagnosis. But none of them are as badly affected as herself.
– Everyone in the family is full-time and functioning as normal. But it is a desperate situation for them too. My ten-year-old daughter has also contracted the disease. She is terrified that the same thing will happen to her, even though she lives a completely normal life and has no pain. But of course she gets scared when she sees how bad I get several times a week, says Linda Bjørgan.
The other three children have fortunately escaped.
For a long time, Bjørgan was afraid to bet on love because of the serious illness. But later she found her current husband.
GOOD SUPPORT: Linda Bjørgan is very grateful that she has her husband by her side. Photo: Private
sea view
– I had given up dating. But then I created a profile online. The first person who wrote to me was the man who was to become my husband. Like me, he was really opposed to dating sites. But it’s a nice story, chuckles the 39-year-old.
She chose to be open about the disease from the start, which was a successful strategy.
– He handled it well. He is the world’s best man, support, best friend and dad. I couldn’t have had better support in my life, Bjørgan asserts.
On 31 July they celebrated their twelfth wedding anniversary, and along the way they have had three children together. Bjørgan also has an adult son from before.
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Horse as therapy
Linda Bjørgan is 100 percent disabled, but has reached an agreement that allows her to work in a clothes shop in Rørvik twice a week. She stands at the till, helps customers and packs goods for the online store.
– I want to live as normally as possible. I feel fresher from getting out and meeting people. It is important to get up and have something to go to, and to feel that you are useful.
She only received education when she was well into adulthood. Due to the illness, schooling during his upbringing was inadequate. She was also bullied, and taken out of school and missed several exams. In 2016, she finished high school.
Photo: Private
sea view
– It was a bit strange to sit there with 15-16-year-olds, but it’s fun to think back on now, says Linda Bjørgan.
She also has training in horse riding. Horse and farrier studies from VGS and internship with a world-renowned trainer in Spain, where she has traveled extensively around the country. The 39-year-old has also taken a master’s course in dressage.
– I grew up with horses and ride horses at a high level. It’s therapy for me, says the 39-year-old, and concludes:
– You must not dig yourself when you are in a situation like mine. There is always a little hope there. I hope the others in Norway with the same diagnosis will not be afraid, because this does not apply to everyone, but only to me, who has been unlucky enough to be so badly affected.
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