Waiting every mother moment walking the baby and eager to see it taking its first steps, but it seems to be different mother a child with hemophilia because the moment that walks where it is for the beginning of the troubles and difficulties as more likely exposed to injuries caused him to bleed, which is more difficult in his case and difficult to control . But with the development of treatment technologies, has become the life of hemophilia patient more easily and can live a normal life does not affect his illness.
It is true that there is no definitive cure for Hemophilia and can not be cured, but thanks to the awareness and good governance can live with Vihaddy patient community that puts him barriers, installed capacity and healthy superiority in several areas. And the awareness of parents mainstay to overcome the disease.
The understanding of the situation and good dealing with it realistically transporting the child to safety to live his life like any other child. Patients with hemophilia experience tells about difficult experiences with the community rather than with the disease itself, but complications of the disease and the results make it a burden on the patient and his family.
A look to the patient community more difficult position and put limits Tsjnh his including finds barriers prevent him from living a normal life like everyone else. This, in addition to the suffering because of his condition when he finds difficulty in securing treatment.
But, as if the disease itself gives strength and impetus to those who suffer, we find that patients Athlon greater rush and enthusiasm, Phippron in certain areas and if they can demonstrate that they enjoy the community other capabilities such as people, but not more.
D. Claudia Khayat:
Wrench patient myself and my body
There is no doubt that the repercussions of hemophilia physical health and significant, Vllahmal results and damage can not be referred to the back.
The truth about the disease, spoke specialist in blood diseases, d. Claudia Khayat, pointing out that the Hemophilia is a problem in the flow of blood resulting from the lack of a specific protein so that any injury to the patient does not heal shall continue to hemorrhage in the event of failing to secure the missing protein. Note that the patient can be exposed to injuries just doing actively naturally Kalsagot during the play.
How transmitted hereditary hemophilia?
Transmitted two types of hemophilia A and B to the child through a gene carried by the mother. Note that females carrying the gene but not women without the disease, which affects males exclusively. If pregnant carry the gene, her son become infected, but if transferred to her daughter will be a carrier of the disease.
If the parent is infected with hemophilia do not have any of his children infected but have all daughters affected gene carriers, note that there are families where five children, all of whom are infected with the disease.
Is it not possible to know the girl in advance whether carrying the disease do not even take to her son?
Possible to know whether the girl was carrying the disease. Also, in the event of cases in the family, can examine the fetus during pregnancy to ascertain if infected with the disease.
At what age are usually detected hemophilia?
Hemophilia is detected usually at the age of nine months to two years by examining a blood sample shows a lack of a clotting factors. But sometimes are not detected mild hemophilia only after the patient is subject to surgery and exposed to severe hemorrhage.
How is the modern treatment of hemophilia patients?
Evolution of the treatment of hemophilia significantly. In the past, you are not the appropriate treatments available, and it was an accomplishment the patient reaches the age of 30 years old. Today the patient can live a normal life, thanks to treatment and education.
And many currently available drugs allow strengthening the muscles for it as much as muscles become stronger less bleeding.
In addition, it is natural to be the missing protein in the patient's blood is the basis of treatment to prevent bleeding altogether. From here the importance of securing protein permanently. The search is currently in the adoption of treatment as a precaution to avoid bleeding, but this requires securing large quantities of protein deficient. In all cases, it is important to deal realistically with the disease and consciously.
And parents should understand the situation because as far as we understand the situation and deal with it consciously positive and avoid the complications and problems.
How patient can learn good management of his illness to avoid complications?
When the patient is telling, if at the age that allows him to understand the situation, we know how to manage his illness and keep his joints so he does not get a disability. Since most patients develop a disability that attained the age of 30 years, and patients are unable then the movement can not live a normal life and needs someone to help him to do chores.
Some even get a disability at the age of 15 years due to the ignorance of parents and lack of awareness, parents do not have the all the same capacity for absorption. The problem in the disease is not entirely physical, but the psychological and social well is important.
What cause for hemophilia patient disability?
Repeated bleeding into the joint to Tdharrh - After years leads to disability. And the presence of therapy alone is not enough to prevent it, because the patient needs to know how to use it and to prevent all that might cause him harm.
Should I have hemophilia patient of exercise?
Hemophilia patients are advised to exercise exercises that strengthen the joints, especially the elbows and knees and ankles. The exercise aims to increase muscle strength, toughness and flexibility, allowing the protection of joints which causes bleeding harmed.
These exercises are advised particularly a day after exposure to internal bleeding to strengthen muscles and joints in order to prevent other cases of hemorrhage. It is the recommended exercises warming up exercises and stretch. As advised to swim as Train all the muscles of the body without causing strain on the joints.
What rate the life of hemophilia patient?
While the rate of life of patients according to the severity of the disease hemophilia and the standard treatment and its effectiveness. That the rate of the lives of patients with severe hemophilia who do not get proper treatment, be much lower and often do not reach adulthood.
In the sixties, when it was not advanced treatment discovered yet, life expectancy does not exceed 11 years. In the eighties, the average life of 50 years, with the development of the treatment.
Today, with the development of more after treatment, almost the lives of patients with hemophilia rate naturally as any person who does not suffer the problem.
Eli experience Jairo
With hemophilia
Eli is Jairo young live with hemophilia and accepted but not beat it stubbornly insisted. With faced many difficulties in the early years, things became easier later Vtaqlm with disease and overtaken and became his 'friend' rather than a foe.
From the beginning of his life with hemophilia says: "I did not know my parents in the first few months that I have hemophilia, but when I started Oahbu at about the age of the year, they started noticing spots on my body and I was bleeding non-stop when he collided with something. I underwent tests and show that I have the disease.
Things were not easy in the beginning, my mother suffered with me a lot, especially that the treatment was not readily available, as now, Vmktna in school for six years Connie you are in a wheelchair and I find it difficult to travel each day between school and home.
I كالمقعد I need to take care of me and this was disturbing to me. My mother did not have a private life, but I was everything in her life. But things improved later, and she was afraid to so much now when I go out with my friends. "
Face society
In addition to the burden of disease, it was not the face of the ruthless society, Vrdod did people was never easy for Eli.
So that in the school was unable to play with the rest of the boys, it was natural to be unable to build friendships. Says: «boys when it comes out to play at break times, I felt compelled to stay in the classroom and every day stays with me a comrades, but sometimes you stay alone. It was not possible to practice a sport like others throughout the first six years.
I was in that time I find myself different from the rest of the boys because I am not able to play with them.
As my situation was different from the others in the class, sit on a couch instead of the chair and I need to instead of me because the large number of detailed move hurt him. But with time, showed to everyone that I do not need to pay attention to the excessive and I like any other child. I was bothered by frequent demonstration.
For me the problem in hemophilia more psychological than physical due to society's perception of the disease and the impact of social relationships. So I am in the university faced many difficulties because I did not find that understanding to spend and I miss attendance because of my own. "
Speaking about his emotional as any young man his age, Eli pointed out that the problem is not with the girl who accompanied even with people who do not accept the idea out of their daughter with a young man who has hemophilia.
"Several failed relationships because of pressure from parents and if they believe that I do not deserve to live like any other human being, knowing I am unable to give any other human right, not even over yet."
And refers Eli that his stay in the house for long periods had a positive side and contributed to the notification to the art of painting and focus it for sport managed to develop this talent enjoyed by, then returned and went to the art of photography who excelled in it and taken a career and supplier live.
But every time see where Eli glimmer of hope community stands in the face of his ambitions again, was expelled from the institution where he worked as a photographer without taking circumstances into account, because the car was hit while doing his job, causing him harm because of his condition, and instead of taking into account and put , especially as it was an accident while doing his job, was expelled from work.
These conditions are all lead Eli ambition and impelled to pessimism and desperation فيتساءل how will be able to start a family and build a future if it is unable to maintain a job for more than two months.
It is natural that raises a young man of his age this question, although missed his illness and beating him, he finds himself in the face of the ruthless society.
Fatima Hmedin
From a patient father to the children inherited disease
Ms. Fatima looks Hmedin example the control of women that have refused to come, her father was suffering from hemophilia and carried the disease with them and I got married and gave birth to it, she says: «Nothing attend parent to have a child patient. FEKKAI mother waited a beautiful child, but true and well, but collided with the bitter reality when her child was born suffering from hemophilia.
About her experience says: «I waited, a mother, a child is better, and my son was born infected with hemophilia, but in the end a child like any other child, and I must accept situation Besaabh.
And then faced the problem of excessive protection for my child and auctioneer because of my fear. Usually rejoice every mother When a child Bouktoath to first.
The I Vantabna feeling scared when I saw him walking because of my fear of him because this was meant to me the beginning of the worries and agony.
And her father Ms Hmedin talks, noting that he was strong, despite the difficulty of securing treatment for Hemophilia at that time, things became much easier these days, which encouraged them to childbearing bore a son (nine years) and daughter (five years).
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