– It affects not only me, but also my family. That’s what 35-year-old Ida-Cecilie Linna from Kongsvinger says. She has Hidrosadenitis (HS), which is an inflammation of the hair follicles where there are sweat glands that produce fragrance. For Ida-Cecilie, this has developed into painful boils over large parts of her body. The pain has gotten so bad that she has had to call in sick from her hairdressing job. HS: This is what it can look like when you have the disease hidrosadenitis under the arm. This is Ida-Cecilie’s right forearm. She struggles with pain and discomfort, but has to wait 1.5 years before she receives treatment. Photo: Mette Vollan / news Hidradenitis (Hidradenitis suppurativa) Photo: Psoriasis and Eczema Association Inflammation of the hair follicles where there are sweat glands that produce fragrance. The local immunity in the skin weakens. Increased risk of otherwise innocent bacteria causing infection. Eruptions often in the armpits, groin, abdomen and under the breasts. Tender, red bumps are formed in the skin, which can develop into boils. The balls may burst and foul-smelling liquid may ooze out. The condition is not due to poor hygiene, is not contagious. The boils are often recurrent and can vary in size and severity. There is no curative treatment, but several treatment options relieve and limit the disease. About 50,000 Norwegians have the diagnosis, and it is often inherited. The condition is most common from puberty to nearly 40 years of age. Sources: Psoriasis and Eczema Association, Norwegian Health Information Technology. Couldn’t lift her own daughter Everyday tasks, such as just putting on a jacket, are challenging for Ida-Cecilie. Clothes and bedding must be washed frequently because of the pus that comes out of the boils. – I can never wear the same clothes two days in a row, and I destroy a lot. The mother of three also struggles to be present for her children to the extent she would like. – Once my youngest daughter, weighing five kilos, was lying in the pram crying. Then I actually couldn’t lift her up. My husband was at work so I had to call my parents so they could come over to help. AFFECTS MORE: – The worst thing about this disease is that it affects others. It goes beyond my husband and my children, says Ida-Cecilie. Photo: Mette Vollan / news Ida Cecilie got her first HS boil when she was 13. Now it has spread to the underarms, the underside of the breasts, the stomach and the groin. In April last year, she underwent surgery for boils under her left arm. But to get surgical treatment on the other arm, she has to wait 1.5 years. And when she gets to remove the boils on the rest of her body, she has not yet received an answer. – I understand that you cannot wait a month between each operation, because it takes time to heal. But I think it is tragic that there is such a long wait. It depresses me. – A low-priority patient group Approximately 50,000 people in Norway have HD. Olaf H Antonsen is a senior physician at the Skin Department at Rikshospitalet. He says that the waiting time for surgical treatment for these patients can often be three years or more. – UNFORTUNATE: – When patients have to wait for treatment, the disease can develop to more severe symptoms and larger areas can be attacked. It is therefore very unfortunate that there is a long waiting time for surgical treatment. Photo: Privat Antonsen believes it is important that treatment of the skin disease starts early, as the tissue around the outbreak can be destroyed and develop into larger areas. – This patient group is not sufficiently prioritised. Which other groups of patients with active disease have to wait so long for treatment? Read the full answer from senior physician Antonsen What do you think about the waiting times for HD patients now? – Hidrosadenitis occurs in approximately 1 per cent of the population and many are very seriously affected by the disease. The typical thing is that the disease starts in early adulthood, but children can also get it. The typical thing is a pimple-like rash that develops into boil-like eruptions in the armpits and groin, but other places such as the genitals are often also affected. Some have a more diffuse variant of the disease and can have outbreaks on large parts of the body. Outbreaks are most often associated with a lot of pain and ulceration with pus that creates odor problems and scars on the skin. Treatment is medical and surgical. It is important that treatment starts early before the tissue around the outbreak is too damaged and develops into larger areas. Medical treatment can reduce disease activity, but damage to the skin often needs to be surgically removed to prevent the disease from developing. Why is this waiting time like this? – We started with extended surgical treatment at Rikshospitalet seven years ago. In recent years, both medical and surgical treatment has improved and the number of patients referred has increased. The patients usually have several areas of the body that need to be operated on, and it must then be done in several rounds, and that takes time. This is done both with local anesthetic in the outpatient clinic but also with anesthesia in the day surgery department. The treatment at the skin department at Rikshospitalet is carried out by dermatologists with special expertise in this type of skin surgery, but is also carried out in plastic surgery and other surgical departments. The skin department at Rikshospitalet does not have enough resources to look after patients from the whole of Health South-East and therefore it is important that this treatment service is also offered in surgical departments at local hospitals. What can it mean for the patients that they have to wait so long for treatment? – When patients have to wait for treatment, the disease can develop to a more severe level of symptoms and larger areas can be attacked. It is therefore very unfortunate that there is a long waiting time for surgical treatment. In addition, there is often a long waiting time to get a medical assessment. This means that the extent of surgery often becomes greater and the healing time of wounds becomes longer, with negative consequences for the patients. Some patients have a more rapid development of the disease, and in that case early treatment is extra important. Studies show that this patient group has a very serious impact on quality of life and function. They are negatively affected both physically and psychologically. Many patients drop out of school and working life, and with better and faster treatment, perhaps this could have been avoided to a greater extent. It is therefore completely unacceptable that many of these seriously ill patients do not receive faster treatment. Patients must be prioritized based on symptoms and those with the most serious illness must be treated first. Will this group be prioritized? – With waiting times for surgical treatment often over three years, this patient group is not sufficiently prioritised. Patients often go several years with symptoms before they come to a dermatologist. Symptoms with boils in intimate places on the body are something that is little talked about and patients often go about this hidden for a long time. Fortunately, attention has been paid to this disease in recent years and we have patients who have spent large parts of their lives with significant ailments and who are now receiving treatment. Unfortunately, many of these have very serious and extensive symptoms and are often more difficult to treat. At Rikshospitalet’s skin department, we have built up a good treatment offer, but we do not have enough resources to treat everyone who needs it. There is a completely unacceptable waiting time both for operations at the outpatient clinic and for interventions under anesthesia. Currently, there are two senior doctors who carry out this type of intervention. Many patients also need interdisciplinary surgical treatment involving both gastro- and plastic surgery departments, and our impression is that there are resource problems in many places. When we refer to other hospitals, the referral often comes back with a message that they do not have the local expertise to treat this. It has been decided that this type of surgery will take place in all healthcare facilities in South-Eastern Health, but this requires that the departments be provided with sufficient expertise for the treatment of hidrosadenitis. Several surgical departments in Helse Sør-Öst must therefore offer and increase the scope of this treatment and, if necessary, have the necessary expertise added. The Psoriasis and Eczema Association works for better treatment options for HD patients. – This is a completely untenable situation for the patients. HD patients go a very long time before they are even diagnosed. When they finally get help, they are met with extremely long waiting times. That’s what Mari Øvergaard, secretary general of the Psoriasis and Eczema Association, says. She is afraid that many people diagnosed with HS will get worse because of the long waiting times. CONCERNED: – It is painful and sad to hear many of the stories we are told. I am worried about this patient group, says Mari Øvergaard. Photo: Tøri Gjendal / The Psoriasis and Eczema Association – It is a low-priority patient group. After all, these are patients who live with a disease that causes great pain. It goes without saying that living with this for a long time has major consequences. For many, the waiting time can contribute to worsening the disease. Many are waiting for treatment Figures from the Section for Skin Diseases at Oslo University Hospital show how many patients are currently waiting to undergo surgical treatment: Consultation: 150 and 160 patients should have had an appointment at the outpatient clinic, but the section does not have the capacity to offer this. HS surgery: Over 320 patients should have had an appointment, but the section does not have the capacity to offer this. HS surgery under anaesthesia: Between 95 and 100 patients who should have been admitted for surgery under anaesthesia, but there is no capacity to offer this. I think the waiting lists will be reduced – We fully understand that this is a troublesome condition, and so there will always have to be a prioritization between the most serious and other conditions. The hospitals are constantly working to reduce the waiting time for all groups. So says Anders J. Debes, department director for Somatics and rehabilitation at Helse Sør-East RHF. He says that there are several reasons why the waiting lists are long. But that they are especially now struggling with the after-effects of the pandemic. LONG WAITING LISTS: – We are still struggling with the after-effects of the pandemic, says Anders J. Debes. Photo: Jon P Petrusson / news – The health authorities have introduced many measures to reduce waiting lists in the wake of the pandemic. We have a strong focus on reducing waiting lists in all subject areas where we see long waiting times. Debes says that for HD patients they have, as part of a larger procurement of health services, entered into an agreement with private suppliers who can carry out the surgical treatment, and in this way contribute to reducing the waiting time. – So we therefore have great faith that the waiting times for this group will be reduced, he says. Hoping for more knowledge Many people think that Ida-Cecilie’s illness is acne, and that she gets them because she is unclean. She hopes for more knowledge about the little-discussed disease. – The problem with HD is that you don’t look sick, but there is intense pain. HS-BYLLER: This is what it looks like under Ida-Cecilie’s left breast. She also has breakouts on her forearms, stomach and groin. Photo: Mette Vollan / news The 35-year-old believes that there are many people who live with HD, but who are not aware of it themselves. – If you are unsure, see your doctor. Then you might be able to get help in time, because I didn’t. BYLLER: Marte Lunden (24) lived with intense pain for ten years before she dared to see a doctor. See Marte in the program “What’s wrong with you?”.
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Ida-Cecilie Linna must be on a waiting list for several years to remove boils on her body – news Innlandet – Local news, TV and radio
