Karin has systemic sclerosis. Systemic sclerosis is an autoimmune connective tissue disease, and it is the same disease as Gunnhild Stordalen.
– You should expect your doctor to find out what’s wrong with you
There are two main types: Localized scleroderma that affects skin only, and systemic sclerosis that can also attack internal organs, the most common digestive system, heart, lungs and kidneys. Many with scleroderma often have other autoimmune diseases as well.
Common symptoms include cold hands and feet (Raynaud’s phenomena), tightening of the skin, unexplained small fingers sores, fatigue, weight loss, muscle and joints, swallowing difficulties, stomach upset problems, sore throat, heartburn and heavy breathing.
Scleroderma means “hard skin”. It is also one of the typical features of the disease. The reason is increased formation of the protein collagen in the connective tissue, so that the skin becomes solid and thickened. Changes in the immune system and in small blood vessels also occur.
Source: Revmatic. no
In the winter of 2009 Karin Eckhoff, 49, from Mortensrud, outside Oslo, went to the seven-mile ski-run Marcialonga in Italy. When the summer came, she had received the serious diagnosis of systemic sclerosis.
– Could it be asthma? wondered Karin when she sought the doctor. The pep in her chest and she was short-breathed. But asthma was quickly ruled out, and Karin was referred to a lung specialist.
– At the interval training with the spelling group I did not get along, she tells the weekly magazine Home.
“Get back when you’ve got what’s wrong with you,” ordered the coach. Karin is sitting in the sofa at the terrace apartment in Mortensrud, Oslo, telling about a time of great uncertainty.
– The specialist’s waiting time was 3-6 months. I could not wait so long, so I searched for a private lung doctor. Here I had an hour in a week. A number of tests were done. I was sent to the Rikshospital for full investigation.
In March 2010 she received the diagnosis. Lungs and esophagus were affected.
She had systemic sclerosis in limited form.
Systemic sclerosis is an autoimmune connective tissue disease that affects the skin and other organs, such as the heart, lung, kidney and bowel, the connective tissue becomes rigid and hard.
– I realized this was serious, but I did not have to read horror stories about the disease online. There was not so much good news to retrieve.
A big grief
Karin started an eight-month chemotherapy process.
– One day of the month I went to the hospital and got the medicine intravenously. In the days that followed, I was really nauseous and in bad shape. The connective tissue that was destroyed can not be repaired, but the chemist took the lining of the lungs and slowed the disease.
Since the disease has been stable, the doctors have been satisfied with the condition.
But lung capacity is only 50-60 percent and it is labeled.
– To me, it has been a great sadness to not be as active as before. I practiced 3-4 times a week with the Nordic walking group. Keeping fit, had become an important part of life. That I should no longer participate as before has been the biggest miss, she says.
Stem cell transplant not applicable
Karin tried to join a group of boys, but failed to hang out. It was a bad loneliness to go alone last time. She thinks it was better to work out alone.
– I have realized that it is important to focus on the possibilities I have, “says Karin.
She is employed as a coordinator at a purchasing department for a company in Oslo.
When Gunhild Stordalen appeared and told about the disease and stem cell treatment she received in the Netherlands, it raised the question of introducing the same type of treatment here in Norway.
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– I have the limited type, which develops slowly, and since internal organs are affected, stem cell transplant will not be any current treatment for me. My option will probably be lung transplant.
There is, however, a trial of new drugs that may break down fibrosis.
– This is very exciting and if these drugs work, it will give me hope to get better without transplant – which is a risky measure, Karin expands..
Better with oxygen
Today, Karin Eckhoff receives medication and treatment for the rigid connective tissue. Once a week, she goes to a physiotherapist who works with the stiff joints.
She regularly searches for a chiropractor who treats her back. Karin is good at doing self-training; she goes on a mill and exercises strength. The body also has a good effect of warm bath, and she runs water gymnastics in a pool not far from where she lives.
Karin goes to the hospital twice a year. Here the pressure between the heart and lungs is measured. Blood tests are also being taken and other studies have been performed.
During a stay at Glitrekliniken in Hakadal, Norway’s largest lung rehabilitation center, measurements of oxygen uptake showed that Karin had too little oxygen in the blood.
Now she is carrying the oxygen she needs.
– It’s only when I work out, I need this – and when I go to the subway. I have a meter that shows the oxygen level in the blood and it’s important that I do not go below a certain level for a long time, “says Karin, showing the backpack with the oxygen concentrator.
Often stiff in the body
Fortunately, Karin is not suffering from pain, but she is often stiff in her body.
Kamilla was tired, had pain in joints and muscles, was hungry and sweating a lot
The disease also causes some lumps to form in the lungs.
– I like to start the day with hostages. Then I just have to be patient and wait for it to happen. If I’m stressing, I can quickly get vomiting. But the mucus must go up. After I got extra oxygen, I’m not so tired and exhausted after a session. When I go with this equipment, it happens that children ask what’s wrong with me, the adults just look away.
The stays at Glitrekliniken make her well. Those who know her say that she looks brilliant after a period at the clinic.
– We are being taken care of, Karin says.
– I get the best treatment and have time to think about myself. We have access to all possible expertise. A nutritionist taught us about lung-friendly diet. Some foods are also advisable to limit the intake of. I usually eat as before. But since I’m not as physically active as before, I eat less and more often. I have to keep up with weight.
Karin also believes she has benefited from the conversations with a psychologist.
– There are days when I’m sad and have many strange thoughts, and because I’m not going to end up in a negative spiral, I’ve got help turning the mindset, she says.
Karin is currently working in an 80 percent position. The one day of the week she is not at work is earmarked for physical treatment and exercise.
Karin is in the scleroderma association and finds it nice to exchange experiences with others.
There are as many diseases as patients with scleroderma. Nobody really likes it. In Norway it is only about. 500 who have been diagnosed, but there are many diagnoses.
Women are apparently in the majority of women, women get 4-8 times more frequently than men.
– There has not been much research on this disease, Karin continues, so it’s hard for the doctors to tell me how my future will be. I got the disease very abruptly, but also slowed it fast. It is important to get started with treatment as quickly as possible.
The daughter is an inspiration source
An important source of inspiration for Karin is the daughter Stine Sundin (22), who is also visiting her mother today.
– It’s nice to go hiking with Stine, Karin smiles.
– She walks at my pace so we can talk together.
The disease has caused Karin not to stress as much as she did before.
– I’ve been good at observing life around me. Now I’m having a good time. Stops up and looks at flowers and nature. And listen to Stine, who says it’s important to see the possibilities, not the limitations.
Stem cell processing is on its way
– Here at the rheumatology department at Rikshospitalet we have started the process of getting stem cell transplantation established as a treatment offer for Norwegian patients with systemic sclerosis, says Øyvind Midtvedt.
Marianne Storli (44) thought she was well
It is far from all patients who tolerate or benefit from this form of treatment.
It is only relevant to offer stem cell treatment to patients with severe forms of systemic sclerosis with less than four years of disease duration and it is estimated that there will be approximately. five patients a year where it may be appropriate to offer such treatment. However, the offer will initially apply to all patients in Norway, and national guidelines must therefore be established.
– Unfortunately, it takes time to establish new treatments, but work is well under way. The introduction of this treatment will represent a paradigm shift in rheumatology, says Midtvedt.
Gunnhild Stordalen has meant a lot of
He believes it has meant enormously that Gunnhild Stordalen chose to stand up with his disease.
When she got sick, there were no guidelines for such treatment in Norway, and without her openness, I’m convinced that it took a lot longer to get stem cell treatment established here in the country.
In the meantime, however, it is important to emphasize that it is not her illness, but medical knowledge, based, among other things, on a major study, which is behind the goal of introducing this treatment at Norwegian hospitals.