Multiple sclerosis, an incurable disease that can be lived with. Episode 46

10.04.2024
00:37:54

Multiple sclerosis is often associated with disability and loss of independence, but most patients have the chance for an ordinary, normal life, full of challenges but also opportunities. In the latest episode of the programme 'Po pierwsze Pacjent', Monika Rachtan talks to Dr Kamila Żur-Wyrozumska, M.D., about strategies for coping with MS, pointing to the importance of early diagnosis, treatment tailored to the patient's needs and the building of social support by all of us

Multiple sclerosis

Multiple sclerosis (MS) is not only a disease of the central nervous system leading to damage to the myelin sheaths of neurons, but also a challenge that each patient faces individually. MS attacks the brain and spinal cord, disrupting communication between the brain and the body. Dr Kamila Żur-Wyrozumska emphasises that 'everyone gets sick in their own way', meaning that the course of the disease is highly individual - from mild cases that do not lead to disability years later, to aggressive forms in which patients may require intensive support in their daily lives.

People between the ages of 20 and 40 most often receive a diagnosis of MS, with the disease affecting women more often than men. There are around 50,000 people living with the disease in Poland, however, as the guest of the episode points out, thanks to early diagnosis and the use of highly effective drugs, there is a good chance of controlling the disease and allowing patients to lead a life as close to normal as possible.

The main aim of therapy, according to Dr Kamila, is to enable patients to 'live their own lives', despite the disease. Although there is no certainty about the future course of MS in a given patient, adequate treatment can significantly reduce the risk of serious disability.

Lack of or ineffective treatment can lead to a gradual deterioration of the condition, which in some cases can result in disability. However, this is not the inevitable fate of every MS patient, and advances in medicine offer increasing opportunities to remain active and independent.

Symptoms

The diagnosis of multiple sclerosis is not straightforward, due to the variety and non-specificity of the symptoms that can appear. Dr Kamila Żur-Wyrozumska points out that 'symptoms are often ethereal and uncharacteristic at first'. The most common among them are numbness, sensory disturbances, usually half-hearted, which can sometimes be so subtle that the sufferer may ignore them. In addition, about 8% patients experience optic neuritis, which manifests as eye pain, decreased vision and colour perception disturbances.

Impaired balance and motor coordination can also be early symptoms of MS, affecting the patient's daily functioning. In addition to those mentioned, other symptoms include fatigue, difficulty walking, bladder control problems and cognitive problems. As the disease progresses, the symptoms can worsen, leading to more serious problems such as significant mobility impairment, greater difficulty in walking and even complete loss of independence in severe cases of MS.

Diagnosis

The diagnosis of MS is based on a thorough medical history, magnetic resonance imaging (MRI) of the brain and spinal cord, which helps identify characteristic lesions , and examination of cerebrospinal fluid. Dr Żur-Wyrozumska emphasises that the diagnostic process 'is all about the patient', meaning that it is important to carefully follow the patient's medical history and reported symptoms.

The approach to diagnosing MS is evolving to enable faster confirmation of the diagnosis and initiation of treatment. In Poland, the average time from the appearance of the first symptoms to diagnosis is about 7.5 months, although this can be up to two years. Reducing this time is important as early treatment can significantly improve a patient's prognosis.

Treatment of multiple sclerosis

Multiple sclerosis does not have to mean loss of independence. In Poland, the healthcare system offers MS patients access to effective therapies that can significantly improve their quality of life. The key, however, is the individual approach to each patient, which allows the therapy to be tailored to their personal needs and life capabilities.

There are more than 120 centres in Poland that offer treatment programmes dedicated to people with a diagnosis of multiple sclerosis. Detailed information on MS treatment centres, including approximate waiting times for starting therapy:

https://terminyleczenia.nfz.gov.pl/#

In the dialogue between patient and doctor, it is important to be open and jointly establish a treatment plan. "The patient is the doctor's partner in the treatment process," emphasises Dr Żur-Wyrozumska, pointing to the need for close cooperation at every stage of treatment. Thanks to advances in medicine and the availability of modern therapies, people with MS have the chance to live a fuller life, despite their disease.

Pregnancy and multiple sclerosis

One of the most frequently discussed topics among women with multiple sclerosis is the possibility of motherhood and the impact of pregnancy on the course of the disease. In an interview, Dr Kamila Żur-Wyrozumska dispels many of the fears associated with pregnancy in women with MS. She emphasises that pregnancy is not only possible, but can even have a positive impact on the course of the disease, reducing the risk of relapses during the course of the disease.

"Pregnancy has a projective effect on multiple sclerosis," emphasises the guest of the episode, pointing to the observed favourable changes in the immune system, which can lead to a decrease in disease activity. Pregnancy does not negatively affect MS progression, and the risk of MS relapses during pregnancy decreases. Moreover, MS does not negatively affect the development of the foetus or the course of pregnancy, allowing women to experience this special time without the additional stress of the disease.

The guest of the episode points out the need to work closely with the treating physician when planning a pregnancy and to adjust the therapy to ensure safety for both mother and baby. It is worth emphasising that pregnancy should be planned - some of the medications used to treat MS are safe during pregnancy, but some should be discontinued. "Pregnancy for a woman with MS is exactly the same as pregnancy for a normal person without co-morbidities," the neurologist emphasises, which is an important message for women with MS planning for motherhood

Fight against stigmatisation

Until a few years ago, a diagnosis of multiple sclerosis was seen as a sentence condemning people to loneliness, suffering and inevitable entry into profound disability. This image, although still present in the public consciousness, is gradually beginning to be modified by positive examples and changing attitudes to living with the disease. Today, many people with multiple sclerosis lead active lives, play sports, choose to start a family and pursue a career, representing a significant shift in the narrative of living with MS.

Nevertheless, the stigmatisation of people with MS, especially in an occupational context, remains a problem. Society and some employers still associate the disease mainly with disability, which can lead to reluctance in hiring people with MS, fearing their lower productivity or frequent absences from work. Such a stereotype is not only untrue but also hurtful, ignoring the individual abilities and adaptability of people living with the disease.

It is worth emphasising that the multiple sclerosis patient is not a 'ballast' for the employer. Modern therapies and a flexible approach to treatment make it possible to adapt lifestyle to work requirements, enabling patients to function effectively at work.

Raising awareness of the capabilities of people with MS, educating employers and promoting patient success stories can help change the perception of MS in the world of work.

However, this change requires a concerted effort: the openness of society, the willingness of employers to adapt to the needs of employees with MS and the courage of patients themselves to share their stories.


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Transcription

Monika Rachtan
Hi, I welcome you to another episode of 'Patient First'. Can you imagine the situation where you are sitting at work, drinking your usual coffee and looking at the empty chair of your colleague who has always sat there and today she is not there? You probably think she has a cold and will be back in three days. Meanwhile, she comes back a month later and says she has been diagnosed with multiple sclerosis. How do you react in such a situation? I don't have a ready-made recipe, but I would like this programme to make you aware that there are people with multiple sclerosis in our society. That is why I have invited to the studio Dr Kamila Żur-Wyrozumska, a neurologist who deals with patients with this disease on a daily basis. I warmly welcome you to the programme. Thank you for accepting the invitation. Our viewers who follow us regularly may remember your previous visit. Back then, we talked about a different, difficult disease. Today, I hope to hear more optimistic news.

Kamila Żur-Wyrozumska
I think so. Today's talk will definitely be more optimistic.

Monika Rachtan
Can a person with multiple sclerosis work normally?

Kamila Żur-Wyrozumska
Treating multiple sclerosis is about allowing patients to live their lives. The disease is very individual; everyone gets the disease differently. In about 15% patients, we see a mild course of the disease, meaning that after 15 years they have no disability. Unfortunately, almost 12% patients can have a very aggressive course, and these patients, even after 5 years, will not be able to function independently without assistance. Fortunately, there are therapies that can modify the course of the disease. The aim of treatment is to enable patients to lead their own lives.

Monika Rachtan
But if we are talking about this aggressive scenario you have presented.... Can starting treatment early, after a quick diagnosis, prevent disability, even if the patient has a severe form of the disease?

Kamila Żur-Wyrozumska
At the beginning, it is difficult to predict how a patient will become ill. There are so-called bad prognosis factors, but we can never be sure of the course of the disease. However, if we use highly effective drugs from the very beginning, there is a good chance that the disease activity can be reduced. There are patients who respond less well to treatment, but thanks to medical advances and new therapies, this group of patients is becoming smaller and smaller. So we have a huge influence on the course of the disease.

Monika Rachtan
So you came with positive news. Today we will focus on the good prognosis. And can a woman with multiple sclerosis have a baby?

Kamila Żur-Wyrozumska
Of course it does. Pregnancy has a positive effect on the course of multiple sclerosis. I have a collection of photos of children born to women with this disease. If a woman plans a pregnancy and dreams about it, it is definitely possible. During pregnancy, the risk of a flare-up is lower, and although disease activity may increase after delivery, overall pregnancy does not negatively affect disease progression.

Monika Rachtan
And tell me, not from the aspect of the disease, but from the aspect of what does such a pregnancy of a girl who suffers from MS look like? Does it differ in any significant way from the pregnancy of a girl who is healthy? Does she, for example, have to be in hospital during her pregnancy, be under the care of doctors, does she go to see specialists more often? Does she see a neurologist every week to check that everything is OK?

Kamila Żur-Wyrozumska
As a general rule, pregnancy should not be planned because we give treatment. Some of this treatment is admitted during pregnancy, some should be discontinued as soon as it is determined that there is already a pregnancy, and some cannot be used during pregnancy. On the other hand, the majority of pregnancies are spontaneous and, in fact, the pregnancy of a woman with MS is exactly the same as the pregnancy of a normal person without comorbidities. MS does not affect development, the development of the baby. These girls can give birth exactly as they planned for themselves, that is, and naturally. And of course there are more caesarean sections among MS patients, but MS itself is not an indication for surgical termination of pregnancy. You can experience this pregnancy in your own way. And tell me.

Monika Rachtan
Does a girl who has multiple sclerosis pass on the risk of getting the disease to her child?

Kamila Żur-Wyrozumska
Multiple sclerosis is not a genetically determined disease, but certain genes that increase risk are population-based anyway. The risk of developing multiple sclerosis is between 0.1 and 0.3 per cent of 10%, while in offspring it is 2 to 4%.

Monika Rachtan
Have you met such patients whose parents had multiple sclerosis?

Kamila Żur-Wyrozumska
Yes, there are such familial cases. However, there is no such gene to confirm such a direct, direct correlation. I know the case of Mrs Margaret, whose dad and sister both suffered from MS.

Monika Rachtan
I would like to make our audiences aware that people who suffer, who have multiple sclerosis are in our society because, as you said, some of them have a milder form of the disease can go to work, can have a baby. What is the likelihood that the lady I passed this morning while driving my daughter to kindergarten and she was walking her son has MS?


Kamila Żur-Wyrozumska
Multiple sclerosis patients are among us and we meet them, for example, in the kindergarten, walking your daughter to her kindergarten group. There are approximately 55 000 multiple sclerosis patients in Poland. This is roughly 15 people per 10 000 population, and 2 500 are diagnosed annually. These are people we pass on the street every day and from whom we do not see any disease. A disease can affect anyone our friend, our neighbour, but not me. Admittedly, we do not have it for health and it can affect anyone. They both get ill. Women between the ages of 18 and 29 are most often ill, but there are diagnoses and later onset so-called multiple sclerosis. There are diagnoses of late onset even after the age of 80. And there is also a paediatric form of multiple sclerosis. It is rare, It is one in 100 000 cases, and 1% of it affects children under 10 years of age.

Monika Rachtan
It's amazing what you're saying, because I think this is a topic that is very rarely covered. Sclerosis in children. I've been in this field for a few years now, but I'll tell you honestly that I won't stop over an article that talks about it. Multiple sclerosis can occur in children and paediatric neurology departments have programmes to treat multiple sclerosis just in children there are drugs. And tell me before. Treatment, then we would need to know what the symptoms of this disease are so that we as informed citizens, taking care of our health, when they appear, get to a doctor as soon as possible. What should such an ordinary person, an ordinary young 25-year-old woman pay attention to? What symptoms should she be concerned about?

Kamila Żur-Wyrozumska
Well, these symptoms are often ethereal and uncharacteristic at first. The most common symptoms, however, are numbness, abnormal sensations, usually half-hearted. These can sometimes be so ethereal that the person themselves will ignore them, or have them ignored by the doctor they initially see. Sometimes even 8% patients will have what is called puzzling optic neuritis. This is already so much more spectacular because you have eyeball pain that increases with movement and on top of that there are visual symptoms, that is, you have blurred vision, visual field loss, visual disturbances, colour acuity, that you see red more in one eye and red less in the other eye. This is quite common. Such another symptom is imbalance. One that is quite characteristic, also often downplayed, and sometimes more dramatic, because imbalances. You can imagine that they affect daytime activity and patients say they feel like they are drunk or like they are on a boat. Sometimes it's that kind of dizziness. With the feeling of movement of the environment it can be like that too. But you know, multiple sclerosis are the symptoms I told you about. There are these symptoms that are quite characteristic, but this disease is also accompanied by other symptoms, such as a feeling of fatigue, this kind of fatigue syndrome, gait disturbances, increasing disturbances, urinary disturbances, sexual disturbances, cognitive disturbances. These are not symptoms that strike at first glance, but they are part of the spectrum of the clinical picture of multiple sclerosis.

Monika Rachtan
And which of the symptoms you mentioned appear first?

Kamila Żur-Wyrozumska
This is also usually depending on the form of the disease, but usually the most common is numbness, usually half numbness. This is such a colourful symptom and they are reported as the most commonly reported first symptom in patients who develop multiple sclerosis.

Monika Rachtan
That is to say, dear viewers, when you develop such numbness, it is worth going to the doctor. You should go to the doctor. Which doctor do you need to go to?

Kamila Żur-Wyrozumska
You know, it is always the first doctor who is the manager of the whole system, the family doctor. However, the doctor who deals with the diagnosis. Multiple sclerosis is the neurologist.

Monika Rachtan
And what does such a diagnosis look like? How long does it take? How long after the first symptoms appear? How long does it take until the disease is diagnosed?

Kamila Żur-Wyrozumska
In Poland, the average is seven and a half months, but it can be as long as two years. We are trying to reduce this time, because time is the brain and neurologists stress this. We are improving the diagnostic systems, the diagnostic pathways, we are changing the diagnostic criteria so that they are there, so that multiple sclerosis can be diagnosed more quickly. And we are trying to educate, to educate ourselves, to know more and more about this disease, to educate colleagues from other specialties and to educate patients, because it is awareness, knowledge that is our greatest weapon. And the diagnostic process itself is all about the patient, because we treat the patient. Not the symptoms necessary for this is the MRI, where we look for legislative changes in the brain image.

Monika Rachtan
What kind of changes are these?

Kamila Żur-Wyrozumska
We call these demonstrative lesions. They are, they are mainly in the white matter and they have a characteristic localisation. Often, if you manage to do an MRI during the so-called active phase, they show enhancement after contrast administration. The second such colour examination is the assessment of the cerebrospinal fluid for the presence of colonic striations, which are present in approximately 95% patients with multiple sclerosis.

Monika Rachtan
Tell me, is what you are talking about extremely difficult? And I think to myself, when a healthy person sits down and listens to this, it's difficult for them to grasp all these concepts, names, diagnostic tests. But on the other hand, when a patient enters this system and has this basic knowledge that you're imparting today, it's much easier for them, because they know that it's there, they know what's going on, they're kind of a player in this situation, they're not sitting on this side bench, they're participating. And that's why we want to pass on this knowledge.

Kamila Żur-Wyrozumska
Especially because knowledge is our power and in fact the patient and most of our patients are very educated and aware. And they also require knowledge, that we talk about it, that we. That we show them why now and not later this MRI, what our motivations are, what our motivations are, if we conduct this diagnosis in such a way and not in another way. The patient is really the doctor's partner in this process, both diagnostic and therapeutic.

Monika Rachtan
And tell me, if I have these first symptoms, if I go to my primary care doctor, if he refers me to a neurologist, are there any centres in Poland that specialise in diagnosing and then treating MS? If I go to any neurological department in Poland, will I get the same good care?

Kamila Żur-Wyrozumska
So, as far as the diagnosis of multiple sclerosis is concerned, any neurological centre in Poland will be able to and I am sure all my neurological colleagues will be able to deal with the diagnosis without any problem. However, treatment of multiple sclerosis is in fact part of the drug programme and is carried out by some centres. There are many such centres in Poland; in principle, there is such access to treatment in every town and city, but it is necessary to find a centre. Colleagues. If you end up in a hospital where they do not have such a drug programme, you will be redirected.

Monika Rachtan
Is there a list? Or preferably a ranking like this.

Kamila Żur-Wyrozumska
There is a list on the NFZ website. I think they are all good, because we mainly use the criteria and provisions of the NFZ programme to be able to treat such a patient quickly and effectively.

Monika Rachtan
Let's go back to that moment of diagnosis, because we have already established that we can meet a patient with scleroderma on the bus, at school, at university, at the disco. Everywhere we can simply meet. But yet we don't. None of us are at all ready for such a diagnosis. Absolutely nobody. And tell me, what condition is the patient in most often? When is this diagnosis made? When you tell him multiple sclerosis?

Kamila Żur-Wyrozumska
Is that the dominant emotion? Because multiple sclerosis has a whole range of fears in front of it. Right? It's fear for my performance, for my, for my intellectual ability, for my attractiveness. Sometimes it's that feeling of relief when the patient suddenly. He understands where his symptoms are coming from, because sometimes they are so ethereal, so uncharacteristic sometimes. They appear and disappear. That he is seen as a person, as a crazy person, sometimes even by doctors. That's what we encounter too. And it's such a feeling of relief and at the same time hope that for these symptoms that have plagued me so far, I might have some treatment options.

Monika Rachtan
Well. In preparing for this programme, I came across many websites where there were patient stories. Stories of patients who wrote and in comments, in different, different forms, that this diagnosis, when they received it, was the worst moment of their lives. But then, over time, as they learned more and more about MS, they thought to themselves I could have had it worse. It's not such a bad disease at all.

Kamila Żur-Wyrozumska
Yes, especially if it is treated, it can be put down to the potential of the disease, that at the beginning there is indeed anxiety and fear, and then patients get used to the disease and go on their way. You know, they're usually at the beginning of their dream life, and then they suddenly find out that they have to go through this life and with some multiple sclerosis, which it's not very well associated with, it's associated with not being fit.

Monika Rachtan
I have always associated it with a wheelchair and a young man with a cane.

Kamila Żur-Wyrozumska
This is more or less how it was presented. On the other hand, as you get to know the disease, as you see that this progression doesn't have to progress at all, as you get to know more people with multiple sclerosis, this picture changes. At first, fortunately in the minds of these young patients.

Monika Rachtan
It is really up to the patient from the patient. The patient has to make a decision I take the plunge and to that centre that has a drug programme and. I take this treatment, but these patients often need support to get on with it. Support from loved ones? Exactly how do you give them this support here? How do you mobilise them?

Kamila Żur-Wyrozumska
You know, when you make a diagnosis of multiple sclerosis, you can't tell the patient it's going to be okay, but you can say I'm going to do everything to make it okay. I have medication and I won't hesitate to use it. In the beginning, patients need contact with the doctor. They have a lot of questions and that contact has to be allowed, because they are the ones who build up some knowledge, some sense of security. And then, as you say, they go home. There, the husband, the partner, the child, school, work, hobbies are waiting. And they have to. The thought arises and if I lose my physical attractiveness, my sexual prowess, my cognitive abilities, my creativity, will these people still be there? And it's often the case that people are not afraid of the disability itself, they're afraid of losing the people behind it. And let me tell you about Mrs Margaret. Mrs Margaret had. Her father developed multiple sclerosis and died. Her sister got multiple sclerosis and died. And she got sick. Margaret comes to me with her partner and she is worried. She's crying about the fact that she's probably going to be incapacitated, that she's seen the disease take away the dignity of her loved ones all this time. And she wanted to be a support to her partner. She wanted to serve him, she wanted to be helpful to him, not be a burden. She needed support. I, looking at this partner, didn't see fear for their future together, for him having to deal with his illness. I just saw concern, concern for this Gretel, and I would like her to also see that you know, that she is important in all of this, that he doesn't see her as a problem, he just doesn't want the illness for her, but the very support in him was there. And it's also important to tell patients that these relationships that they have with their loved ones are not based on their attractiveness. One that is so superficial, that they have depth, that this attraction is multifaceted.

Monika Rachtan
What's going on with Gretel right now?

Kamila Żur-Wyrozumska
Margaret has a wonderful partner, she is waiting for treatment and I think she is happy. She has a man with whom she can so I think calmly and with a lot of confidence go through life, whatever it may be, but we will fight for the best.

Monika Rachtan
We have talked about the fact that it is up to the patient to pick up the pieces. And tell me, how important is this time from the first symptoms of the diagnosis until the patient takes the plunge? Does he have a lot of time to make that decision? How does that time affect what his life will be like afterwards?

Kamila Żur-Wyrozumska
Time is the brain and that's such a core message of the brain. You know, in Multiple Sclerosis, all the studies say that the earlier we start treatment, the better long-term effects we will have. And so all the recommendations, especially the EAN, which is the European Academy of Neurology, and the ECS, which is the European Multiple Sclerosis Treatment and Research Society, recommend treating as soon as possible. And this treatment is highly effective, because the price of delayed treatment or insufficient treatment is the loss of nerve cells and increasing disability. And it is very important to make the most of this golden hour for the brain. Of course, it is always the patient who decides. However, it is important to remember that time is the brain.

Monika Rachtan
You said you said the names of the scientific societies abroad that are involved in researching drugs, developing diagnostic strategies. And I'm thinking to myself that in many diseases this is the case and many times patients block the decision to reach out for treatment. Fear of complications. And here it turns out that all these societies, the clever names that you mentioned, these clever people are working and researching all these drugs to find out if these treatments are safe. And the moment you put a patient on all these therapeutic options that you have in that bag of yours, you're sure that they're not only effective, but that they're not going to momentarily murder that patient, for example, because patients are scared. This is a terrible treatment in general a terrible disease, a terrible treatment.

Kamila Żur-Wyrozumska
No, the treatment is safe and the doctor is the guarantor of safety. We take responsibility for this and we have the tools to do so. One such tool is the drug programme, which the doctor is obliged to supervise. We check how they are doing. How the blood is and whether there are any. changes, whereas treatment, including highly effective treatment, is safe treatment.

Monika Rachtan
And tell me what the patient's first months are like after diagnosis? Does he actually spend actually? I say that because that's what patients might think. Yes, people who have this diagnosis, are they going to spend many hours in hospital, in the wards, are they going to have to lie in bed at home. What does that look like?

Kamila Żur-Wyrozumska
You know, treatment is all about that, striving to keep the patient from feeling ill. And of course hospitalisation is when the patient has a flare-up and requires a steroid for therapy. He then lies in hospital and gets his steroids. On the other hand, it is sometimes limited to as many as four visits a year to see the doctor, to check his condition, to check the safety of the therapy and to prolong it. He simply takes the medication quietly. In a large proportion of cases, he can take them independently at home, he can be completely independent and live his life. We aim to make the patient think as little as possible about his illness, to feel it as little as possible. Well, but it is never the case that it is perfect. However, there are always some problems in the system, some shortcomings, something that could have been done better, something that could be improved, something that could be improved today. When it comes to the treatment system for multiple sclerosis patients. You know what patients sometimes say about the contact with the doctor, that it is insufficient and we really need to work on these relationships. However, such an ideal way of selecting therapy is short making. This is the kind of method, which, by the way, is backed up by scientific research, which says that if the patient makes this decision together with the doctor, it has a better impact on their further treatment. The second thing I wanted to mention is the treatment of symptoms accompanying multiple sclerosis, such as the fatigue syndrome I mentioned, such as mood disorders, such as depression, which affects as many as two-thirds of patients, such as urinary or bowel disorders, which can affect urination. Even 70% patient significantly. It affects the quality of life of these patients dramatically. These are young people and these are the questions that need to be asked because we have some therapeutic options that should be used.

Monika Rachtan
That is, again, improving the patient-doctor relationship is what is most likely to have a significant impact on what the daily lives of these patients will be like.

Kamila Żur-Wyrozumska
You know, because a tablet is a tablet, but this human relationship is also important.

Monika Rachtan
I'm going to ask you now after all about these tablets, because maybe it's the case that we are listening to a person who has just been diagnosed with multiple sclerosis. Maybe this doctor is not the most empathetic person in the world and doesn't have an hour of time to explain to this patient. So what treatment options can patients look forward to? What do you have in there in the bag and what do you suggest to patients?

Kamila Żur-Wyrozumska
My dear, I have a whole arsenal. Maybe we have treatment and mu on the cervical module and mu oppressive?


Monika Rachtan
Please explain.

Kamila Żur-Wyrozumska
Firstly, we are changing the immune system to work a little differently and this example is a drug that acts as such a decoy. He is a little bit similar structurally to the nerve cell sheaths of the brain and these antibodies that normally attack the brain are lured into this fake. The other drug is, for example, the cytokines you give and so the lymphocytes don't produce with the kind that would be damaging to the nervous system of the brain. You can also reduce the possibility of cells multiplying then your army is reduced. Fewer enraged lymphocyte soldiers less able to do damage. You can send your enraged lymphocyte soldiers to psychotherapy and there they learn to deal with their emotions and thus are not so aggressive. You can, for example, remove a certain group of lymphocytes, which can be compared to, say, a match in Chorzów, where Kraków fans are on their way, and then the police are on their way to the stadium on the 4th and catch all the cars with a penalty sign. Then you can drain the air in the combat vehicles and the enraged army stays at the barracks. They won't get there. You can take away the access code to the central nervous system and those lymphocytes won't get into that isolated immune organ either. You can let the entire cadre go and wait to recruit new generals and everyone into every form of lymphocyte. Or you might as well release only a portion of the army and see what new fry there will be. Also, the possibilities are great. There are tablets, there are drugs that come in tablet form and stock form and in intravenous infusions. You can also give the drugs in cycles, that you give a drug for a few days in the first year, a drug for a few days in the second year and then you can. Several years, completely without the need for any additional medication. We have a whole range of possibilities. On top of that you have a patient who has a certain, you know, a certain disease with a certain activity. On top of that, he has co-morbidities, he has plans, a certain lifestyle, maybe maternity plans, and under the influence of these different factors, you choose a therapy for him individually.

Monika Rachtan
OK, so the therapy is tailored to the patient's needs, to the patient's life. The patient has a voice here. You ask Always.

Kamila Żur-Wyrozumska
Always. You know, it's also a responsibility and the patient wants to participate in their treatment. Also, as you talk to patients, most patients like to have more of a fear of failure, potential failure than side effects. And that also needs to be established at the beginning.

Monika Rachtan
And tell me, these days young people. Because we have established that multiple sclerosis affects young people, they live in very different ways. Some, for example, take a backpack and travel the world all year round. They come home for Christmas, then they go somewhere again, they work remotely and they are totally not fit. That kind of model of coming to the hospital every now and then, taking these drugs, pills, in general taking pills every day is impossible to do. There's a good prescription for them too.

Kamila Żur-Wyrozumska
Yes, but remember that in treatment it is to free the patient from the disease. First, I have to make sure that this disease doesn't take away his intellectual and physical ability. And that is the first thing. And the second thing is to make sure that he can live his lifestyle. That is to say, however, medical considerations decide first, and this, this, this is what I insist on. On the other hand, there are highly effective medications that you can give yourself at home. On the other hand, the level of effectiveness of the treatment itself is very high, these are very high, often very convenient therapies.

Monika Rachtan
Until a few years ago, it was the case that with every illness we said we in Poland have such hopeless treatment, in Europe they treat people. In our country it is not that level at all. Zero reimbursement. How would you say about multiple sclerosis, are we reaching that European level?

Kamila Żur-Wyrozumska
We have reached a world-class level. We have exactly the same drugs as our colleagues in France, Germany or the United States. The treatment is free and reimbursed. And when it comes to costing something, it is. In 2018, it was the second most costly drug programme in Poland after breast cancer treatment. Now I think we are also on the podium and as much as possible we can very much.

Monika Rachtan
And if you had to give the minister three pieces of advice on what he can do for patients.

Kamila Żur-Wyrozumska
With multiple sclerosis? A lot is done because these drugs are already there. I think. I think the big need is rehabilitation in people with this kind of already more advanced disease.

Monika Rachtan
Because we now talk all the time about those patients who got the treatment, it's great, and there are also those who did.

Kamila Żur-Wyrozumska
There are patients who have a secondary progressive form or a severely advanced form. And here there are needs. Here there is a need for help, for support for families. This is the need for medical assistants. Here is the need for rehabilitation, perhaps treatment from plasticity, although this too is becoming a reality already. And these are the people who need a lot of this support. They need all kinds of support, including sociological support.

Monika Rachtan
I appeal to the Minister of Health and all decision-makers influencing the treatment of patients with multiple sclerosis. I hope they will listen to the advice of a practitioner who is close to patients and knows their needs. This is important for our programme.

Kamila Żur-Wyrozumska
If multiple sclerosis affects cognitive function, patients cope less well. Their situation is more difficult from the start.

Monika Rachtan
On the one hand, it is good that we do not notice the disease in our colleague, but on the other hand, she may need empathy and support. So what does a day look like for a person with multiple sclerosis, for example, a 28-year-old female patient?

Kamila Żur-Wyrozumska
Can she talk about Gracia? She has a severe form of the disease, has recently married and is considering children, but hasn't decided when yet. She comes regularly for intravenous infusions and works. She has not told her work about the disease, she is afraid of the reaction. She has brown eyes but sometimes sees double. Ola, another patient, graduated from law school. Ignored first symptoms and resented the doctor. She became pregnant, which improved her condition. She considered children and the pregnancy turned out to be unexpected. Ola is perfect, always well dressed and punctual.

Monika Rachtan
It's amazing that these people are living normal lives and are economically active. What extreme jobs do your patients have?

Kamila Żur-Wyrozumska
I have a patient, David, who travels the world. My patients are all different people: hairdressers, lawyers, engineers. Multiple sclerosis does not define their lives.

Monika Rachtan
So can it be said that they are living a normal life?

Kamila Żur-Wyrozumska
Yes, many of them are living normal lives, although the disease is incurable. We have effective treatments that give them a chance at normality.

Monika Rachtan
What should they do when the disease nevertheless affects their lives?

Kamila Żur-Wyrozumska
Social support is important. Talking about the illness with loved ones can help maintain normality.

Monika Rachtan
Does the stigma of people with multiple sclerosis no longer exist?

Kamila Żur-Wyrozumska
Unfortunately, I cannot say that. Disability can lead to social exclusion.

Monika Rachtan
Do patients often not inform their employers about their illness?

Kamila Żur-Wyrozumska
Yes, often illness is treated as something intimate. It is an individual decision.

Monika Rachtan
Is society ready to accept people with chronic illnesses?

Kamila Żur-Wyrozumska
Unfortunately, there is still a risk of stigmatisation and professional difficulties.

Monika Rachtan
What are the three most important lessons from our conversation?

Kamila Żur-Wyrozumska
Multiple sclerosis is chronic and incurable, but well treated. Everyone's disease is different and it is important to treat not only the disease but also the accompanying symptoms.

Monika Rachtan
What does the humanisation of medicine mean in the context of multiple sclerosis?

Kamila Żur-Wyrozumska
It is a partnership between patient and doctor and a conversation about the patient's real needs.

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