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Wednesday, April 17, 2024

“Maybe in the morning he can't get out of bed, he has pain all over his body”

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“The person with rheumatism has to manage the pain. Many rheumatic patients have chronic pain, which in itself creates a difficult situation for the patient to deal with. This pain bothers people a lot and makes it difficult for them in their daily life. He might not be able to get out of bed in the morning to start his day, which means he has to wake up an hour before he has to go, because there is this stiffness, which means pain throughout the body, which they feel that they haven't slept well, pain in their bones, in their joints”.

These are the words of Andris Fokas, the president of the Rheumatoid Association of Cyprus, who can describe the daily life of people with rheumatism, in every detail, since she herself has been dealing with the same condition since she was 22 years old. A condition that can be diagnosed in anyone, at any age and when it comes into people's lives it changes everything.

“I was diagnosed at the age of 22 but had symptoms since I was 19. My diagnosis is an autoimmune, inflammatory disease and my life has changed in a big way. In all aspects, family, work, personal, social. The diagnosis brought many changes”.

She did not want to expand further as it was difficult for her to relate to her personal experience. However, he mentioned in every detail all the difficulties that a person with rheumatism can go through in his daily life, both in terms of the condition and in terms of treatment by society and the state. On the occasion of the 40th anniversary of the foundation of the Rheumatoid Association of Cyprus, Mrs. Fokas, as president for the last three years and a member of the Board of Directors since 2006, spoke to REPORTER and explained what rheumatism is and all that it brings.

“We are talking about autoimmune and inflammatory diseases and musculoskeletal and degenerative diseases. The diagnosis can be made from age 0 to old age, we have no age category, it can happen at any time in the person's life. The most common rheumatisms are rheumatoid arthritis, lupus, ankylosing spondylitis, psoriatic arthritis and others such as scleroderma which is a more difficult condition. Once diagnosed, the person is asked to learn what is happening to their body, especially when they are autoimmune, to face and handle their new reality.”

Difficulties in everyday

“A person with rheumatism, from the beginning of being diagnosed, has to deal with a chronic condition, which means that at the beginning it is very difficult to manage it and to understand their new life. He should visit the medical centers very often, for various tests, appointments with specialists, etc. Rheumatisms are more than 200 different diagnoses and we cannot talk about a specific diagnosis.

Initially, it may have some specific symptoms, such as morning stiffness, meaning the person may not be able to get out of bed in the morning to start their day, which means they have to wake up an hour earlier than it must go, because there is this stiffness, which means pain all over the body, and they feel that they have not slept well. They have pain in their bones, in their joints, they need help to move. During the day the condition improves and in the evening the fatigue returns and they cannot function as they want.

The person is asked to change several things in their life when the diagnosis is made, such as changing occupation, especially if it is manual and will not be able to manage it. The person's lifestyle changes. For example, if the person has in one day to go to work and then go to the supermarket, then he will not be able to do anything else because he will get tired and fatigue will occur and he will not be able to act and do another activity in the day.

The person has to manage the pain. Many rheumatic patients have chronic pain, which creates a difficult situation for the patient to cope with. Also, several rheumatisms cause disabilities, with all that this implies for the person. “Unfortunately”, this disease is often invisible and as a result, people with rheumatism are often bullied by people in society because they are not seen as disabled. For example, a person can park in a disabled parking space, with the card and all the receipts, and be bullied by society about why they parked there and that they don't have a disability.

People with rheumatism face problems with access to the NHS and specifically with access to health professionals, since the number of physical therapies is small. As the Rheumatoid Association of Cyprus we are in consultation with the Health Insurance Organization to change this. Also, another major problem is the soon-to-be-retired pediatrician of the Makarei Hospital, who monitors children with rheumatic diseases, and they have not yet found a replacement. This issue needs to be resolved soon as it will affect a large number of children.

Another problem they face is at work, which is a difficult situation. People in order to be able to work often need some arrangements in the workplace. For example, they may need to telecommute and not show up to work every day, which in Cyprus is still in its early stages. In the time of the pandemic it was something that worked very well, but in the post-pandemic era, the understanding is gone and we have returned to the normality that everyone must go to the workplace. There is also a problem with working hours, because eight hours is too long for people with rheumatism”.

Children and rheumatism

“With children we have problems, in terms of education and school, because our diseases are invisible and there is ignorance on the part of teachers about what rheumatism is and that some children may have this condition, which may make it difficult for them and to create some problems for them in education. For this reason, from 2023 and until 2026 when we set the milestone, our actions for children and young people with rheumatism will focus on the training of teachers in schools and we have already done some actions on this topic, but and for parents and how to get in touch with children with rheumatic diseases, recognize some symptoms and how to help children integrate into the school community.

Also, since last year we started an action with the book “My friend Niara”, which we brought from Greece and this particular book has been approved to be in school libraries”.

The link

“In 1984 a group of rheumatologists decided together with the help of the late rheumatologist Dr. Clerides, to create the Association and its goal was to claim the rights to the health of rheumatologists, because 40 years ago we had only one rheumatologist and one pathologist who had a special interest in rheumatology. Rheumatoid patients were not particularly treated, due to the lack of both doctors and medical care from the state.

They decided to create the Association and called it the Antirheumatic Association of Cyprus. Over time, with the claims of the association, we had a better course, regarding the attendance of rheumatologists, and the Ministry of Health also began to give more importance to rheumatic diseases.

Around 2000, the association began to become stronger, to have more members and with its claims, in 2004 it managed to come to an agreement with the Ministry of Health and to bring the biological agents, which were also written in the state prescription. Biological agents are innovative treatments for rheumatic diseases, until then patients with rheumatism, especially with autoimmune diseases, received cortisone, painkillers, anti-inflammatories and some chemotherapy preparations, which were not as effective in inhibiting the disabilities and the progression of the disease in people.

Biological agents are innovative drugs that inhibit the progression of disease, inhibit some disabilities and above all make the person more productive in all aspects both in personal life and socially and in the work or learning part. It was a great success of the association and then rheumatologists started coming to Cyprus. In 2004 we had five and today we have 30. So, due to the small number of doctors, in 2000 we did not have a rheumatologist in the state hospitals, we only had two general internists, with a special interest and they also saw some rheumatic patients.

Again with the efforts of the Association, we managed to hire a rheumatologist at the Nicosia General Hospital, where he saw several patients. We didn't have NHS back then and it was quite difficult for rheumatism patients to go to private doctors. However, with the introduction of biological agents in Cyprus, another problem arose, that private rheumatologists could not prescribe the drugs for rheumatism patients, to get them free of charge from the public. Again, the Association through its own actions and struggles managed to reach an agreement with the state and all private doctors could prescribe the biological agents and not only that, they could prescribe referrals for radiological diagnoses, for hematological tests and everything else that the rheumatologists needed, they could do it with a referral from private doctors to the public.

We were the only category of chronically ill that had that ability to go to private, but have everything else free from the state, based on the health plan that existed at the time. I lived through the process, I was a member of the Board of Directors and then I was the general secretary of the Association and I was in contact with the whole world. It was a godsend that we achieved what we achieved, because we could go to a private doctor and pay £25 and then get the rest from the state for free.

The Association has always been next to the patients, the goal at the beginning was medical care, but along the way it became a very strong association, providing psychosocial support to individuals, with many training programs, many support programs, the members of the Board and other members they had the opportunity to be trained abroad, since the Association is an active member in Europe and in global organizations”.

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<p data-block-key=The actions of the Association for the 40 years

On the occasion of its 40th anniversary, the Rheumatoid Association of Cyprus has organized some actions, which will be addressed both to the members of the Association and to society at large, in order to send various messages.

«-World Juvenile Rheumatic Day 18 March 2024.

On the occasion of the International Day of Juvenile Rheumatic Diseases, March 18, 2024, SyReK will announce the launch of the Newly Diagnosed Children's Information Campaign and will continue to raise awareness of juvenile rheumatic diseases through several actions. In this campaign, special information cards will be created that Rheumatologists will have available in their offices. These cards will be given to the newly diagnosed children and information will be written on them to contact SyReK if they wish, so that they can be given an information package based on their age.

The first information package will be for ages 3-12 years old and will include a Bunny or Lion teddy bear, a Coloring set and an information booklet on Juvenile Rheumatic Diseases which will be for use by parents, teachers and children's therapists. The second information pack will be for 13-18 year olds and will include a Gym bag, preferably purple for girls and gray for boys, will be accompanied by a plastic gym bottle and an information leaflet on Juvenile Rheumatic Diseases which will be for use by parents, teachers, therapists as well as teenagers themselves.

-The Annual Rheumatic and Musculoskeletal Diseases Awareness Week held every year in May. This year, it will be held between May 13th and May 18th. A Press Conference will be held on May 13 to mark the start of the Annual Rheumatic and Musculoskeletal Awareness Week 2024. The purpose of the press conference is to inform media representatives about the upcoming Conference on May 17-18 on the topic: Self-Management Rheumatic Diseases Doctor-Patient Joint Decision. The main goal of the Conference is to empower the patient through a human-centered treatment. Additionally, Doctor-Patient communication (and/or other health professionals) should be a continuous communication channel that results in the optimal management of the patient's health. Distinguished health professionals from both Cyprus and abroad will be invited.

As part of the Awareness Week for Rheumatic and Musculoskeletal Diseases, there will be the following activities:

-Swim for my Neighbor- Iakovos Limassol Swimming Pool

< p data-block-key="f9gtr">-Climax of the events with the holding of a Dinner in Nicosia District

Along with the above, throughout the Week there will be enlightenment through the media with the presence of representatives of SyReK in broadcasts of an informative nature, publication of articles in newspapers and magazines as well as in the NKD.

-October 12, World Day of Rheumatic and Musculoskeletal Diseases. Every year we celebrate World Rheumatic and Musculoskeletal Day on October 12. The goal of the day is to inform and raise public awareness. Over time, we organize the action Walk for Rheumatoid Patients where people and organized groups are invited to walk, to "companion" with us at Finikoudes in Larnaca on October 12.

During the day in the area of ​​Finikoudes (or better central street of the Larnaca district) information sheets of the Association will be distributed to the public. Under the PIR we will also organize the Wear me action on October 9 where we will invite companies, institutions, organizations, services, celebrities, politicians and general citizens, to wear the SyReK shirt all day in the workplaces, to also distribute informative forms and to upload their photos to the MKD with the slogan #COME TOGETHER for a better quality of life. This action has been carried out for the last two years with great success.

In addition, on the occasion of the 40th anniversary of the foundation of SYReK, professional fashion designers will be asked to design a collectible t-shirt. The culmination of the 40th anniversary celebrations will be completed with the creation of a bandana with the logo of the SyReK printed on it. The bandana will be designed and marketed for a variety of uses, such as a neck scarf, headband or hair bun, or as a Wristband.

-Chronic Pain Conference: For 6 years now, in collaboration with the Hellenic Anti-Rheumatic Society, ELEANA, we have been co-organizing with great success a conference on Chronic Pain and Rheumatic Diseases. The goal of the conference is to inform patients about ways to manage chronic pain caused by Rheumatoid Diseases, in various aspects of life. The conference is held in Athens and 5-7 patients from SyReK participate. At the same time it is shown on the internet. The conference is videotaped and patients can then watch it from the SyReK platform on the YouTube channel.

-Porea Zois Magazine: The "Porea Zois" magazine contributes to the information of Rheumatoid Patients regarding medical issues, articles from the scientific community, treatments and new approaches, services, programs, news, actions and campaigns of our Association. Two issues are published per year. Our magazine is distributed free of cost through post to all our members which are approximately 6000. The magazine is also distributed to government and private hospitals, medical centers, various officials, health professionals and agencies. Each issue consists of 28 to 32 pages of A4 size and more than 6000 copies are published.

The campaigns will receive special exposure while members of the Association's Executive Committee will participate in radio and television broadcasts of an informative nature, to promote and promote Rheumatic Diseases Week.

In this basis, we consider your support to be particularly important, on the one hand because by supporting us as a sponsor, you will contribute to the implementation of what is being planned in view of the 40 years of operation of the SYReK and on the other hand, you will give us the opportunity to offer our Rheumatoid fellows the maximum information and education for one more year. We are sure that we will be able to have a close and constructive cooperation, with the main focus on offering services and support to our fellow Rheumatoid patients, so that they can have a truly better quality of life.

The Rheumatoid Association of Cyprus advances, develops and strengthens alongside the Rheumatoid for a better tomorrow”.

Source: reporter.com.cy

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