event

On April 17, every year, starting in 2004, when this day was organized for the first time by Adriana Henderson and Laurie Kelley from the United States of America, we organize, in our country, events dedicated to hemophilia, together with doctors, decision makers and supporters. We mark this day in order to increase the degree of information and awareness of the population on this condition. Although we are seen as ill, we do not think that our suffering is seen as great. Many of us are getting harder and harder. We pass each other and it is not sufficiently known what difficult situations our parents are going through. We are people who strive to have a normal life but the system has not helped us much. We know that worldwide, 420,000 people have haemophilia. 94% of people with haemophilia are supported by family members or partners, indicating the degree of dependence of the disease. 41% of parents of patients with haemophilia reported negative experiences when they told others about their sick children. On this occasion, we publicly thank the parents of the patients with haemophilia for the dedication and love they are fighting for their children every day and we consider them some heroes.
Hemophilia is a treatable disease. It must be understood that the treatment of haemophilia is effective and has proven to be safe, and the provision of appropriate therapy is cheaper than treating subsequent complications.

Annually, starting with 2009, the Romanian Hemophilia Association – Covasna Branch organizes the Family Day. The purpose of the meeting is based on the need to strengthen the links between the patients suffering from this disease and their families.In the opening, Mr. Trucki Mihaly, the president of the branch greeted those who met at this celebration, after which Mr. Andrei Daniel, the president of the national association, presented the situation of haemophilia in the country. It is normal for us to still be dissatisfied, says Daniel, but the treatment of medicines has been significantly improved for those suffering from this disease, especially for children through the prophylaxis program, due to the ongoing efforts and campaigns organized by the Romanian Hemophilia Association addressed to the Government of Romania. He showed that although there are few hemophiliacs in number, they can put pressure on the Government of Romania by organizing conferences and public awareness campaigns. He had words of appreciation for the activity of our branch and shared books and brochures on the hemophilia of the families present.
Members of the local branch also participated in these events of the Romanian Hemophilia Association.
Mr. Kiss László, Covasna County Clerk, presented the report of the local branch. Mr Kiss emphasized the unity of those suffering from this disease. The association must continue to fight, so that today’s youth will not become disabled people of tomorrow, no person with haemophilia will not live in suffering, pain, disability or with the prospect of a shorter life. Covasna branch has always been a bridge between the two national associations. With the new elections a lot has changed in the Hungarian association, but at the meeting the desire to continue the cooperation between the representatives of the haemophilic ones in Romania and Hungary was affirmed.
Further, Daniel Andrei, President of ARH, as well as Péter Nagy and Gömbös Erzsébet, members of the Hungarian Hemophilia Society board answered the questions of those present.
Mrs Gömbös was very impressed by the fact that the little ones have prophylaxis in Romania and are holding our fists to achieve the same with adults.
The second part of the meeting was intended for the joy and celebration of the event. Families discussed their problems, made new friends and acquaintances, played football.

The year 2020 marked the 15th anniversary of the STAR Children Relief Organization, led by Adriana Henderson, organizing camps for children and young people with haemophilia and oncological diseases in collaboration with the Romanian Hemophilia Association.

The Camp Ray of Hope has meant, over time, for hundreds of young people, carrying out fun and recreational activities, educational, socializing and creative workshops. In this camp, every year, a number of 40 children and young people with haemophilia benefit from sports programs, counseling services in order to raise awareness of their illness and increase self-esteem. There are also educational programs regarding the knowledge of their own disease and the learning of the self-injection procedure for greater patient independence. Also, the creative workshops increase the ability of the children to communicate, to pay attention and to discover the potential of each individual. stimulating each child to develop their own personality and encouraging them in group activities. At the anniversary clock, the camp Ray of Hope, was held in both Romania and Italy. The personal experiences of the children are shared through the eyes of some of them in the pages of the magazine and we wish you a pleasant reading .

Alex confesses to us. “I really feel like a normal child, to have a happy childhood, to forget that you have a health problem, to do whatever you want, not to be afraid that you may hit yourself and that you have no treatment. This camp gives us the opportunity to meet special people, visit sights and take trips. For me personally, this camp has meant a lot from all points of view. We thank all the sponsors, doctors, assistants, volunteers who were with us and without whom this camp would not have taken place. I wish this camp to be organized for many years from here on. ”

Our childhood was marked by those words: “you are not allowed there”, “do not do this”. The lack of treatment and specialized staff in the areas we come from has somewhat restricted our childhood. But here, in the camp in Austria, we could do what we wanted. I swam, surfed, climbed the mountain, saw animals at the zoo, climbed the cable car and went down with the bob.
I made many friends, from the volunteers who came to the camp to the medical staff, all very wonderful people willing to help and guide us at any time. I left home with my mind and soul full of beautiful memories, with the thought that maybe next year we will meet again and tell us everything we have lived before. It was daylight, the rays of the sun caressed my face, I opened my eyes, I arrived at the bus station in Timisoara where my parents were waiting for me. We hugged and headed home, eager to tell them and show them pictures of the wonderful places and people I met there, Bogdan says.

We started from the following question: How to have a healthy marriage in the context of a chronic illness?

Objective: Providing support, counseling and personal development of married hemophilia and life partners in order to increase the quality of life by integrating them into educational, psychosocial and recreational programs.

Context: Hemophilia is a serious disease. When not properly treated, the joints become the source of permanent problems and have a negative impact on the daily life of the hemophiliac. From school to professional and family integration, the person with hemophilia needs support and support. For the general population, the stage of marriage is not without worries, worries, problems or happiness. People with haemophilia are having difficulty choosing their life partner and the number of those getting married is small. estora in educational, psychosocial and recreational programs. Marriage is beautiful but it is not easy to get to be so as you have to work for your couple relationship. Hemophiliacs like other people go through difficult times and times of illness and lifestyle, often without a sustained balance, affect their own family and especially the couple. Marriage is the choice of a lifestyle that goes beyond any limit of illness, race, ethnicity, religion, social status, disability or belief. Among the difficult situations that couples encounter are: lack of communication, partners do not feel understood, decreased passion or lack thereof, routine or boredom in the couple, disinterest or indifference to the partner, quarrels often about important or less important things, activity low sex, financial problems, lack of respect, mistrust. Even if the hemophilia patients in Romania who are married are in a difficult medical condition, we want them to believe that they can have a happy marriage and to challenge them to do everything in their power to reach this goal with their partner.

Why a school of hemophilia for couple’s life?

• because, at present, the family is intensely exposed to disease pressures, devaluation and disintegration;
• for the quality of married life, which impacts the whole family, economy and society;
• to encourage a healthy family life and healthy marriages
• to bring relief and healing where appropriate.

 Objectives:
• a time dedicated to promoting family values, priorities and health;
• understanding and awareness of both partners of the other’s needs;
• a context in which each married couple can refresh, energize and improve their marriage.

The leadership camp is important in the light of the fact that in our community, hemophilia patients and vonWillebrand’s disease, education, information, organizing events, etc. are always needed. Therefore, a generation of leaders will generate and facilitate good practices and ideas transfer to local communities so that the quality of life of patients is improved.

The camp program focuses on transferring information to participants about the basic skills they will need to become leaders in our community. In addition to specific presentations and workshops, at the same time our participants will live in tents, learn about the environment, history, how to make a camp fire, visit tourist attractions and amazing natural wonders.

Our specific activities focus on:

• team building skills;
• communication skills;
• relevant information on the treatment of haemophilia and its prospects;
• developing key management skills

Our goal is to strengthen the Hemophilia Association in Romania with young and active members.
As a leader you have to make a commitment to yourself that you want to constantly develop. A leader leads by his own example. Today, times have changed. You need to think, analyze and if you reach the conclusion that it is worth it, then act with courage. If we allow ourselves to be dominated by fear, we will never succeed in achieving something truly important

Always do what you feel is honest and fair

“Today you run in my place, tomorrow we run together”, it is Andrei’s wish to see his dream fulfilled, that is, that in the future, with a complete and constant treatment, to run alongside his friends.

Andrei,  goes to school and sees all the other children playing, running, jumping, he is on the ladder, his hand above his knee, which hurts him. Sighs. He wants to do what others do, but he can’t ,not now . He hopes for something, which his parents tell him will be better. The same hears from  older hemophiliacs. And he doesn’t understand. Why not now? He is receiving treatment, not for a long time, which is why his knee joints are partially damaged. Twiches when he sees Mihai, his colleague, running after the ball that jumped near him, shot by the other boys. Mihai smiles, asks Andrei how he feels and receives the same answer, fine. Andrei can be like Mihai. To run, to play football, to ride a bicycle. Therefore, out of solidarity, Mihai and other children and young people, responded to Andrei’s invitation to run for him.

They can always be among us: at school, at work, in the hospital; sometimes they complain, we see their suffering; most of the times they cry alone at home. Regardless of the situation, they carry their suffering with dignity. Your own illness. It is called hemophilia, when the disease affects only boys, or von Willebrand’s disease, when it manifests itself in both males and females. It does not heal but is treated. Every year, on April 17, is celebrated the International Day of Hemophilia, a day dedicated to those affected by this disease. There are people who strive to lead a normal life even if, often, the system does not help them.We organize this event with the thought of a normal life for each of us. Whether we are sick or not, we live in the same community and it is good to do so in a beautiful, healthy and responsible way for one another.

Education is so important that every association of patients and physicians has realized that a coherent and common plan will achieve success. Thus, the Romanian Hemophilia Association in collaboration with the “Cristian Şerban” Foundation starting in the summer of 1992, in Cheveres, Timiş county, offered the first camps dedicated to hemophilia patients in which, information on disease, treatment and recovery, occupied central area of of these meetings. Subsequently, with the opening of the “Cristian Şerban” Medical Center in Buziaş, these aspects were professionalized and the assistance of patients with hemophilia increased significantly with the existence of a diagnosis and treatment program dedicated to hemophilia. It is natural and important as subjects. News and perspectives in the treatment of haemophilia; the physio-kinetotherapeutic assistance of the patient with haemophilia; invasive orthopedic interventions in the treatment of patients with haemophilia; assistance of psychological, family and social support; the particularities of physio-kinetotherapy in hemophilia; patient compliance and adherence; hemophilia inhibitors; Present therapeutic realities and opportunities for perspective, have been and will remain important topics to be discussed within our community .

THE MAIN LEARNINGS OF THE SCHOOL FOR HEMOPHILIA

Nothing about us, without us!
The wonder of improving our chance of therapy was possible … only with the full involvement of patients and doctors! The cost-effectiveness and efficiency of the therapy have been proven; its application must be watched! Ignoring and not using the opportunities offered is not only shameful, inadmissible, but also guilty.
Preventing it is cheaper than treating it. Not to treat is more expensive than to treat!

Prophylactic substitution introduced early in childhood is the key to success, but it is profitable even in the conditions of its later initiation! Even a single joint bleeding can be too much !!!
In case of doubt, substitute yourself. Treat yourself immediately! At home! Do not delay more than 1 maximum 2 hours from the onset of  bleeding..

Never below 1% factor level VIII!
It’s not just me … there are many others like me, with equal rights to treatment.
Only a consumption of a minimum of 4UI Factor VIII / head / year and 0.5UI Factor IX / head / year in the country gives us the chance of equal, non-discriminatory access to satisfactory treatment.

Kinetotherapy is indispensable in our lives. “Use it. Or loose it (muscles and joints) “
We agree with our National Registry, provided we have restricted access to our data.