Untreated rheumatoid arthritis is rapidly removing young people from the labor market. The disease takes away youth, joy, ambitions and dreams. However, it does not have to be this way. Well-treated patients can work normally, start families, pursue their passions – says Monika Zientek, president of the Polish Association of Young People with Inflammatory Connective Tissue Diseases.
Halina Pilonis, Medonet: Rheumatism does not sound dangerous – many people suffer from it, but no one dies of it. Can such a disease be a stigma?
Monika Zientek, president of the Polish Association of Young People with Inflammatory Connective Tissue Diseases 3 let’s get together: While in the Association, I met many young people who had to interrupt their studies or quit their jobs due to illness. They do not leave the house because they are unable to go down the stairs. They have difficulty holding a toothbrush or cutlery. They can’t fasten buttons. Meanwhile, with good treatment, it wouldn’t have to be that way. I remember during a clinical trial I was given a biological medicine for six months. I haven’t seen a doctor during this time. I felt like a healthy person. Rapid diagnosis, access to treatment and rehabilitation would allow many patients to live a normal life.
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Why do we downplay the problem of rheumatic diseases?
Many stereotypes have arisen around rheumatism. About 200 diseases are commonly used under this term. And it is not true that they only affect the elderly, because, for example, ankylosing spondylitis attacks between the ages of 15 and 30, and juvenile idiopathic arthritis – in children. The changes that these diseases cause can stigmatize. Young people who contact our Association tell how they are ashamed of their deformed hands. They cannot imagine meeting their peers in a pub or cafe when they will have to grab a glass with a drink. The young boy complained that he was ashamed of meeting new friends because he would have to shake hands with them. We were contacted by a girl who was afraid to go on a date with her boyfriend. After all, he won’t hide his hand trying to pick up the cup of coffee. Many people find it difficult to dress or make up for themselves, let alone even more precise activities.
The risk of developing inflammatory diseases of the joints from the spondyloarthritis group can be determined by testing the HLA-B27 antigen. This test can be performed by selecting Medonet Market’s arthritis mail order test.
Spine stiffening also stigmatizing?
Ankylosing spondylitis attacks between the ages of 16 and 30. It causes the formation of bone anastomoses in the place of flexible connections of vertebrae. A person stiffens, usually taking a bent position, and cannot straighten up. An untreated patient can be recognized on the street. It has the silhouette of a skier, i.e. the torso is tilted forward due to contractures in the hip and knee joints. Going up the stairs can be a huge challenge, especially if you want to do it discreetly, without making a show of yourself. The patient himself notices that his height has decreased because he cannot straighten up when measured. It also limits the field of view, which may, among other things, obstruct driving a car. Besides, the prosaic act of eating soup turns out to be impossible, because you cannot bend over the plate sufficiently. Moreover, pain and fear of its appearance accompany the patient all the time.
- For rheumatoid pains try the Ecological Sea Buckthorn Juice. On the other hand, you can use Bioherba Avocado Oil on a regular basis to prevent inflammation.
Can the pain not be eliminated with the right drugs?
Due to inadequate treatment, 65% of people with rheumatic diseases experience pain continuously or for several hours a day. It is so strong that it prevents you from moving or sleeping. And the painkillers prescribed by the rheumatologist are not able to eliminate it. Pain lowers self-esteem, excludes from normal life, prevents interpersonal contacts and, as a result, causes depression. There is a girl in our association who was unable to walk because of the pain. Only hip surgery could help. And since she lives on the third floor in a building without an elevator, she did not leave the house for three years while waiting for the operation. The only contact with the world was the Internet. After the operation, she started walking and even went back to work.
- Try Lumbago – EKO anti-rheumatic tea, which you can buy at Medonet Market. We also recommend bay leaf ointment, which has an analgesic effect and reduces swelling.
However, do you lead a normal life?
I fell ill with rheumatoid arthritis at the age of 20. It started in September. After returning from the mountains, my knee began to hurt, which did not seem suspicious. Then the ankle joint painfully joined, but I also ignored that. The disease was unfolding. It was only after six months that I went to the doctor. I was lucky because I was referred to a rheumatologist who diagnosed RA. Not everyone is so lucky. In the case of ankylosing spondylitis, it takes several years from the first symptoms to the diagnosis. The treatment helped me and the disease disappeared. In the case of rheumatoid arthritis, it is important to initiate aggressive treatment, preferably within three months of the onset of symptoms. Unfortunately, sometimes family doctors, instead of rheumatologists, refer patients to orthopedists, neurologists or physical therapy, and valuable time passes. Meanwhile, untreated RA is quickly eliminated from work and condemned to a wheelchair.
- FOR JOINTS – a herbal set from Herbapol in Krakow can be bought at a favorable price on Medonet Market. The set includes: Fix tea FOR JOINTS, capsules HEALTHY JOINTS WITH COLLAGEN, as well as HAKOROSL Gel + Ginger + GLUCOSAMINE.
In spite of the relapse of the disease, did you become a mother?
The treatment that was offered to me turned out to be successful and induced a remission during which I gave birth to two children. Many sick girls hear from their doctor that disease re-emission is the best time to have a baby. So if their health condition forces them to go back to medication, they experience a drama because the time window in which it was possible is closed. Pregnancy is not recommended during treatment. My illness returned a month after giving birth to my second child. It was a hard experience for me. I couldn’t move, and yet I had two young children. The pain was excruciating. And I wanted to breastfeed my son. The rheumatologist who consulted me suggested that I have to choose either treatment or feeding. I couldn’t accept it and I was looking for a doctor who admitted that a mother’s right is to feed her child. He set up a precise medication regimen for me to allow me to feed for as long as possible. I did it for six months. Then I returned to Disease Modifying Therapy.
- Prophylactically for problems with the musculoskeletal system, it is worth using the preparation MSM YANGO – Organic Sulfur extracted from DMSO. The active ingredients of the supplement soothe rheumatic ailments and accelerate the regeneration of joints.
Biological drug therapy enables a normal life?
The aim of treatment in rheumatic diseases is to achieve remission, i.e. to regress symptoms of the disease, return to work and normal life, and to prevent premature disability. Biological drugs work really well. Unfortunately, in Poland, a few percent of patients are treated with them, while the European average is over a dozen. For a long time, as an Association, we have been calling for changes in drug programs. Constructed records inconsistent with the standards of treatment cause significant limitations in access to therapy. The simplest solution seems to be the transfer of biological drugs administered subcutaneously from the hospital to the category available in the pharmacy on prescription. There is no justification for treating patients with self-administered drugs at home through hospitals, which is inevitably more costly and does not occur in other European countries.
- For joint pain, it is worth using Cryossil AZ – regenerating gel for the area of the joints, which you can buy at Medonet Market at a favorable price.
Can I work during treatment?
Work is important because it motivates you to take care of yourself, leave your home and pursue your passions. However, finding a job after informing a potential employer that you are ill is not easy. Young adults face the dilemma of being treated or working. Not every employer tolerates regular and frequent dismissals from work in order to get an injection under the skin in the hospital. Our Association wants to change this and that is why it implements the Project Step Ahead – Professional Activation of Young Rheumatically Patients. The project is financed from the Association’s own funds and from a grant obtained in the Ordinary Active competition. Its goal is psychological support for the sick and creating conditions for them to fully participate in social life through professional activation.
- To support the locomotor system, it is worth using Propolia BeeYes glucosamine capsules for joints on a regular basis. We also recommend YANGO Glucosamine Sulphate, which supports the regeneration of joints.
How do parents of children with rheumatic diseases cope?
They are so tired of dealing with a child’s disease that they no longer have the strength to fight the system. The worst thing is that there is a shortage of pediatric rheumatologists and many parents are starting to consult their children for treatment abroad. There is no problem if the doctor prescribes drugs that are cheap and available in Poland. The problem begins when the doctor sees the need to start therapy with biological drugs. Then the parents start looking for the possibility of collecting funds for biological treatment in foundations. Meanwhile, it costs from 3 thousand. up to 5 PLN per month.
Caring for the education of children is also a big challenge. Aggressive treatment is associated with lowered immunity. Parents then consider starting an individual course of education in order not to expose their children to contact with their peers who have a cold. This, however, comes at the cost of acquiring social life skills in a peer group. As part of our Association, the Movement of Parents Affected by Rheumatic Diseases was established. Parents exchange experiences and information with each other.
Are you struggling with rheumatoid arthritis? You can reduce the pain by compressing yourself. Take advantage of the special compresses that you can buy on Medonet Market:
- FLEX Mini compress for cold and warm compresses,
- FLEX Standard compress for cold and warm compresses,
- FLEX Medium compress for cold and warm compresses,
- FLEX Max compress for cold and warm compresses.
Heat has a positive effect on the body struggling with rheumatoid arthritis. Therefore, as an aid in treatment, you can reach for the VITAMMY Heat Electric Heating Cushion.