Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
Sorin Neacșu have had multidrug rezistant tuberculosis (XDR-TB). He ies cured now and he tells us his story without hesitation, and full of emotions. Even there are four years since he was declared cured, he is still impressed by the people that saved him, people from the Association for MDR-TB Patients Support.
I have TB and I will heal. Tuberculosis is curable! Remember: Anyone may get infected with the tuberculosis microbe! If you follow the doctor’s or the medical practitioner’s advice and take your medicines as prescribed, you will heal from tuberculosis.
Dear patients, this brochure is for the patients with tuberculosis (TB). Here, you will find information on the disease and its treatment, and advice on how you may face this disease.
This is the beginning of the brochure for tuberculosis patients edited under this project. It was developed with the help of patients, to help patients. This pocket booklet is an extremely useful tool for persons diagnosed with TB, because it provides them with information on the disease, the treatment and the implications it has, in an accessible and friendly language.
The stories of TB patients are different but they all reveal the same fears that, most of the times, are the effect of a lack of information. Sorin Neacșu, a former patient with extensively drug-resistant tuberculosis (XDR-TB), the most complicated form of tuberculosis, told his story and welcomed the publication of the brochure: “The fact that I received the information I needed helped me understand the disease and saved me. This is why I was glad when I found out that an information material was being drawn up for tuberculosis patients and I wanted to take part in its development, I wanted to help. I am glad that patients will have a valuable tool to help them cope with the fear of the disease, the lack of information and the untrue rumours. Healing is a road. All the patients start at the beginning of this road and walk on it, some more easily, others more difficultly. The important thing is to know the path you are taking. This is why it’s good to be accurately informed.”
10,000 copies will be printed and distributed under the project to the specialists in the National Tuberculosis Prevention, Surveillance and Control Programme (NTPSCP) network, and from them to the patients. The brochure directly addresses the patients, proving its usefulness from the first pages:
“How can you use this brochure? Read the material to find out the most important information on tuberculosis and how to face the disease and the problems you may have to deal with. You can share the brochure with other persons and comment upon it with them (medical practitioners, your friends, family, other patients). You will feel safer when you find out what tuberculosis is, how it is transmitted and how it is treated. You will also be able to discuss various aspects about TB with other persons. A more open attitude towards the disease helps people be better informed with regard to it. When those around you understand more about TB, they will feel less scared.”
When they find out they have tuberculosis, most of the patients know nothing or almost nothing about this disease, and the only sources of information available to them are the physician and the Internet. As explained by the psychologists who work with people with TB, when the patients are told the diagnostic, they have a mental block and are unable to remember everything the doctor tells them, which is why, after the shock of the diagnostic fades, they start looking for information on the Internet. The risk of reading inaccurate information on the Internet is very high, which is why the best thing is that the correct information, controlled by physicians, reaches the patients. A patient who is well and correctly informed has better chances to adhere to the treatment and therefore to heal. Therefore, the brochure is also useful for the medical practitioners, who will be able to offer patients this tool comprising accurate information.
“This brochure is also useful to the specialists who work in the healthcare field. Because it eases their work. The medical staff delivers information to the patients, but how do we realize whether we give the patients the information they need? We too developed a brochure of this kind in Norway, six years ago. Medical practitioners say that after they receive this brochure, the patients are less scared, have more information and ask questions. From these questions, medical practitioners understand what the needs of each patient are. This is why I believe that this brochure is almost magical, if used properly. Surely, it can be handed to the patient with a simple ‘Look, here’s something to read.’ But the idea is that this brochure should be a communication tool. The doctor should say: ‘Look, today, we talked about the treatment you will undergo for six months. Here, you can read about it, you can also find questions that other patients asked the doctors and the answers to these questions. Maybe you will want to ask me questions too at the following visit. It also includes information you probably don’t need right now, but at a certain point you will need it and you will want to ask questions. So, keep this brochure.’ This is how we want it to be used. This is how this brochure becomes magical,” explains Mona Drage (photo), the chairwoman of LHL International Tuberculosis Foundation, at the launch of the brochure.
The booklet will be available in English soon.