NoRo: the place where we learnt that we are normal people

Thalasaemia testimony

My name is Ana Maria and I am a young girl suffering from one of the 8000 rare diseases - Thalasaemia.  Our organisation arranges annually a conference in which most of the patients are involved. Last year, during this conference, I had the opportunity to see a presentation of the NoRo Resource Center made by Dorica Dan. We had all heard of this centre but I never believed that there was such a place for patients with rare diseases in Romania and, because during this presentation we were informed that we could have a group of patients stay at the centre for 1 week, we decided that we would do it. And we did so three months after this meeting.

I’ve never been to Zalau before, I only knew that it is a small town, close to the border with Hungary. So after 12 hours travel by minibus, through a lot of snow, we finally arrived, tired and furious with the weather, the disease and life in general. We were not even capable of seeing the centre and enjoying the beautiful things around us, or the hospitality that the staff from this place showed us. Everything was just too much for us.

The following morning, after breakfast, we met and were introduced to the programme that we would have for our 5 days at NoRo. We finally understood that it is not a rehabilitation centre (so, we all asked ourselves why we were there?) and it is not a hospital, a respite or an occupational therapy centre. They said that it is something from everything and that mainly, we will learn during this period how to cope with the disease in our everyday life. We would have therapies but, in fact, we would be trained in therapies which would help us at home, as we would learn how to do it. It was strange because we expected something else.

We understood everything soon. We were evaluated first by an interdisciplinary team: psychologist, physiotherapist, doctor, social worker and a special education teacher. The program was diverse and intense; we were challenged and found out more about ourselves and about the others.  We participated in support groups with a psychologist but also some of our group members were introduced into individual counselling meetings. We learnt exercises that I never knew that could help my health and I can continue them at home. We learnt where we can find social services in our region that might be of support to us and about our rights as disabled persons and where to apply for these rights. We had meetings with the social worker and the special education teachers, we learnt about our disease, attended training on first aid and joined interesting art therapy activities. We had a lot of fun together!

One of the most interesting activities during that week was the meeting with the professionals from the commission for expertise of the Ministry of Health on Hematology (Prof. Margis Serban and Maria Puiu) and the discussion that we had about the treatment. In fact, they were in Timisoara and we were at the NoRo centre but we could communicate by teleconference. We insisted on our needs but, even if all of us and the NoRo staff tried hard to make them understand our needs, I had the feeling that they did not understand our desire to live a full life and not be dependent on infusion…But, anyway, it was an interesting debate. In different conditions it would not be possible. At another time we may not have the chance to find out so many things and to open hearts so much. They tried to be closer to us and even bring in their “studio” a nurse who happened to be a patient like us, having the same struggles in her everyday life. 

The week ended sooner than we believed and we had to return home. But, beforehand we participated in a press conference to launch the Rare Disease Day campaign. We shared our feelings and thoughts to the press and for the TV. We were speaking about our life and about our experience at NoRo and regretted enormously that we couldn’t stay longer, but we had been “charged” with a lot of good energy, positive thinking, lots of information about our condition,  hope, able to continue our fight and having in mind the decision to return to NoRo as soon as possible. The group was more supportive now, we became friends and supporters for our peers and decided to write in our association’s magazine and blogs about this great experience, to let  the other patients know that they have this opportunity, too.

I can say that NoRo is the place where we learnt that we are normal people. Maybe we need some help sometimes and we know now where to look for this help. Most important, we have every reason to be positive and to hope for a better future, as there are people that CARE.

Ana Maria, living with Thalasaemia, attending NoRo Resource Centre, Romania

Page created: 19/09/2012
Page last updated: 26/04/2013
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases