During the National Conference of the Patients, MDA ROMANIA expressed its opinion according to the improvement of the medical services accorded to the dystrophics.
The body of delegates was made up of – Loloiu Iulian, Apreotesei Marian, Liteanu Zoica, Morosan Petru, Tontsch Peter Klaus, Tontsch Daniela. We thank them all.
We attach the discourse made by Druta Oana Catalina and Daniela Tontsch -
THE SITUATION OF THE PATIENTS WITH DISTROPHY
We greet and offer the organiser our congratulations according to this event as well as all the active participants in the improvement of the patients life from Romania.
In my discourse I directly refer to the distrophyc patients, who are born ill and that is why all the doctors from our country directed our steps towards the only hospital of this type which is to Valcele, Covasna county, led by doctor Radu Horia. His activity is made up of the developed neuro-muscle heredity which especially affects the child and the young adult. It was registered over 35000 cases of such affections.
To this moment, the Neuro-Muscle centre – DR . RADU HORIA – Hospital include 81 beds -60 beds for the adults and 21 for children.
A very serious problem of the distrophyc people is that they are refused to be in other hospitals where there are specialists for their therapy. As i mentioned before, there are 35000 of distrophycs and we know that 2916 would have the posibility to be hospitalzed for 30 days but from these persons 2835 people can not be hospitalized because there are not enough beds. It is known that this illness is characterized by the progressive deterioration of the muscles and invalidity. To all these the absence of the hospitals also contribute to the developing of this kind of affection.
In some kinds of distrophycal forms the miocard muscle is affected together with other organs and also these patients are refused to be hospitalized because this is the evolution of their illness and the doctors can not do anything for their remedy. We do not want to be misunderstood that we denigrate the medicine and their representatives, quite the contrary we ask their help whenever we need. I ca not help giving a personal experience- A few years ago I had a high fever, 38-39 degrees, I had an awful headache and sick. I called the ambulance and the doctor prescribed me anthibiotics. I took the treatment but my state was more and more worse. For 6 days I called the ambulance 6 times and by chance I met a trainee doctor who diagnosticated me corectly – acute appendicitis. She said the she had not wanted to leave without me because I immediately need hospitalization. After 15 minutes I was in the operate hall. I can not remember her name but I am alive because she accorded a serious attention to their studies and she knew to practice what she had learnt. I am very grateful to her and I am sure that she saved lives now on.
Coming back to the distrophy problems, we remind that a patient like this needs an accompanying permanently and where they are allowed to be hospitalized it is refused the permanently presence of the accompanying because there are enough medical staff to take care the patient. But it is not known that every patient has a different type of care . There is no calificated staff according to this type of illness and we do not pretend to be because we pay our accompanying who is calificated with the care of the persons with disabilities. We solicitate tolerance because we need a permanent accompanying during our hospitalized period. If these 2 needs are accepted there are solutions, too. It is inhumanely that an accompanying who is a member of the family to stay on a chair near the patient during his period in a hospital.
There are situations when the buildings, the rooms and the toilets from the hospital are not equipped with space of moving the wheelchairs, there are no ramps and elevators.
There is no curative treatment for the muscle distrofy, the existing medications and the therapy has the role of slowing down the evolution of the illness. The main medication is the therapy with vitamins but they are too expensive to use them quite often.
For that patient who is imobilized in a wheelchair, it is urgenly needed by the medical furniture such as a bathroom chair, the elevating of toilet and the tub chair. The nursing home does not pay us to buy all these things. The accompanying who raises up several times a day a person who is inert, he is at risk to become a patient, too.
The same problem is to buy an electric wheelchair because the nursing home has not enough money to do that. We admit that is too expensive but we solicitate to pay it by instalments. We informed about the facilities offered by other countries according to these acquisitions and we amaisingly descovered that these are offered by state and they are changed when they are made use of.
It is very important the existence of the centres with calificated staff for the care of the patients and we prove the great number of distrophics. There are many cases when they have no family or they have old parents who live in an asylum or maybe they do not have an accompanying. Fancy yourself such a life.
Imagine that you could not put on or eat by yourselves, to stay isolated in the house without seeing the sunrise or not to touch your ideals!
The highbrow compensates the severe, ireversible and progressive affection of the striate muscles.
We want to believe that these mentioned above were not known and we hope to be solutionated all these demands so that the distrophics can be useful in our society for their intellectuals capacities that are not affected by the terrible illness.
The body of delegates was made up of – Loloiu Iulian, Apreotesei Marian, Liteanu Zoica, Morosan Petru, Tontsch Peter Klaus, Tontsch Daniela. We thank them all.
We attach the discourse made by Druta Oana Catalina and Daniela Tontsch -
THE SITUATION OF THE PATIENTS WITH DISTROPHY
We greet and offer the organiser our congratulations according to this event as well as all the active participants in the improvement of the patients life from Romania.
In my discourse I directly refer to the distrophyc patients, who are born ill and that is why all the doctors from our country directed our steps towards the only hospital of this type which is to Valcele, Covasna county, led by doctor Radu Horia. His activity is made up of the developed neuro-muscle heredity which especially affects the child and the young adult. It was registered over 35000 cases of such affections.
To this moment, the Neuro-Muscle centre – DR . RADU HORIA – Hospital include 81 beds -60 beds for the adults and 21 for children.
A very serious problem of the distrophyc people is that they are refused to be in other hospitals where there are specialists for their therapy. As i mentioned before, there are 35000 of distrophycs and we know that 2916 would have the posibility to be hospitalzed for 30 days but from these persons 2835 people can not be hospitalized because there are not enough beds. It is known that this illness is characterized by the progressive deterioration of the muscles and invalidity. To all these the absence of the hospitals also contribute to the developing of this kind of affection.
In some kinds of distrophycal forms the miocard muscle is affected together with other organs and also these patients are refused to be hospitalized because this is the evolution of their illness and the doctors can not do anything for their remedy. We do not want to be misunderstood that we denigrate the medicine and their representatives, quite the contrary we ask their help whenever we need. I ca not help giving a personal experience- A few years ago I had a high fever, 38-39 degrees, I had an awful headache and sick. I called the ambulance and the doctor prescribed me anthibiotics. I took the treatment but my state was more and more worse. For 6 days I called the ambulance 6 times and by chance I met a trainee doctor who diagnosticated me corectly – acute appendicitis. She said the she had not wanted to leave without me because I immediately need hospitalization. After 15 minutes I was in the operate hall. I can not remember her name but I am alive because she accorded a serious attention to their studies and she knew to practice what she had learnt. I am very grateful to her and I am sure that she saved lives now on.
Coming back to the distrophy problems, we remind that a patient like this needs an accompanying permanently and where they are allowed to be hospitalized it is refused the permanently presence of the accompanying because there are enough medical staff to take care the patient. But it is not known that every patient has a different type of care . There is no calificated staff according to this type of illness and we do not pretend to be because we pay our accompanying who is calificated with the care of the persons with disabilities. We solicitate tolerance because we need a permanent accompanying during our hospitalized period. If these 2 needs are accepted there are solutions, too. It is inhumanely that an accompanying who is a member of the family to stay on a chair near the patient during his period in a hospital.
There are situations when the buildings, the rooms and the toilets from the hospital are not equipped with space of moving the wheelchairs, there are no ramps and elevators.
There is no curative treatment for the muscle distrofy, the existing medications and the therapy has the role of slowing down the evolution of the illness. The main medication is the therapy with vitamins but they are too expensive to use them quite often.
For that patient who is imobilized in a wheelchair, it is urgenly needed by the medical furniture such as a bathroom chair, the elevating of toilet and the tub chair. The nursing home does not pay us to buy all these things. The accompanying who raises up several times a day a person who is inert, he is at risk to become a patient, too.
The same problem is to buy an electric wheelchair because the nursing home has not enough money to do that. We admit that is too expensive but we solicitate to pay it by instalments. We informed about the facilities offered by other countries according to these acquisitions and we amaisingly descovered that these are offered by state and they are changed when they are made use of.
It is very important the existence of the centres with calificated staff for the care of the patients and we prove the great number of distrophics. There are many cases when they have no family or they have old parents who live in an asylum or maybe they do not have an accompanying. Fancy yourself such a life.
Imagine that you could not put on or eat by yourselves, to stay isolated in the house without seeing the sunrise or not to touch your ideals!
The highbrow compensates the severe, ireversible and progressive affection of the striate muscles.
We want to believe that these mentioned above were not known and we hope to be solutionated all these demands so that the distrophics can be useful in our society for their intellectuals capacities that are not affected by the terrible illness.
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