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In a serious condition, product of a severe kidney injury, is hospitalized in Hospital Las Higueras Talcahuano, Javiera Mancilla 17 years, who suffers from Hemolytic Syndrome and Atypical uremic Shua, extremely dangerous and rare disease that affects one person per million inhabitants, only 13 cases are registered in Chile and requires a drug called Eculizumab Soliris, which has a cost of 30 million per month
The address of Las Higueras hospital confirmed the critical condition of the patient, who is admitted to the intensive care unit of the health center, which is treated by plasmapheresis (extracorporeal blood culture) and is in dialysis on Monday, Tuesday and Wednesday.
They said that all necessary measures are taken to count as soon as possible with the drug that the minor nec Esita to survive. Cost to be borne with the hospital's own resources
Although, at the local level, efforts are made to say the cure as soon as possible, Álvaro Madrid, specialist of the disease, has said in his In the country, patients who are affected by atypical hemolytic uremic syndrome receive treatment with eculizumab in less than 48 hours of overt symptoms to avoid complications. "Allowing the disease to be controlled absolutely, the more time it takes to receive the treatment, the less chance it has to control it, leaving more sequels and more damage."
In the case of Javiera who expects Eculizumab for 15 days, according to the specialist – who collaborates with the Right to life group, to which belongs the minor porteña – is in danger of renal failure.
In fact, he explained that in Madrid all health is universal and free. Therefore, patients take the drug and explain that at the beginning of the treatment, the girl, because of her weight and height, needs three blisters every four weeks and, starting from fifth week, four blisters every 15 weeks.
Although the treatment may be only six months to stabilize the patient, there are cases where he must be for life "because his own body is attacked and produces thrombi in his blood vessels, which begin to develop. First by the kidney, but then attacks all the organs: lung, heart and brain, that is why this girl has become more complicated. "
With respect to the commercial value of Eculizumab says that the value in Europe is one third of the Chilean, because the government buys directly to the laboratories, without intermediaries "that increase three times the value, each bulb costs 3,000 euros and in Chile it is sold to 10,000".
Shua involves deregulation of the C5 complement system, which is linked to the immune system, giving rise to a disorganized activity of the immune system, which damages the lining of the blood vessels and produces small clots. The kidneys are susceptible to inflation and blockage by clots resulting in acute renal failure and severe anemia.
Kidney failure can cause high blood pressure, heart attacks, lungs, seizures and fatal vascular accidents.
We need help soon
Lorena Rodríguez, sister on behalf of the affected minor's mother who is in fourth grade at Amanecer School, said that on June 1 Javiera came into the hospital, but that his case was confirmed June 25, the rejection tests must be done: lupus and purpura.
"My sister has severe renal insufficiency, severe anemia, platelets do not develop and thrombotic microangiopathy, Shua symptoms We are relieved to know the diagnosis, but when we realize that serves only one drug, the most expensive in the world, about 32 million pesos and three weekly doses, it's the worst. "
The family is waiting for the hospital to be able to provide the medication to save his life as soon as possible. "The problem is that we do not know how many doses are being administered," he said, adding that there should be a special protocol for severe cases.
The Amanecer School, in which the child participates, consisting of five teachers, to carry out activities contributing to the payment of treatment, initiatives that will be communicated on the website of the 39, establishment . "I think they're thinking about bingo and neighborhood council also supports raffles."
Due to the illness, the child needs 10 blood donors a day, who must travel to Las Higueras Hospital Monday to Friday, from 8 am to 1 pm
Protection Resources
A unanimous decision of the Supreme Court accepted, on June 21, 2018, an appeal for protection and ordered the Ministry of Health Grant to the treatment of a minor who Shua suffers, because refusing to pay for the mentioned drug threatens the life of the child.
In fact, journalist Miroslava Jadrievic, belonging to the Potato Association with Shua, stated that the majority of parents who filed protective appeals to obtain the drug received a positive response .
Jadrievic, who has a daughter, named Josefa, 20 years old with the syndrome since the age of four, claimed that in the case of her family, Isapre Colmena covers the costs of medicine. "He greeted us for catastrophic insurance, the first case was Josefa and then another who approved him immediately."
But all other cases had to be judiciarized and await a response from the Supreme Court, which is unfortunately slow and that in the case of a minor with Shua "that is devastating for a patient because" today he can be healthy, have an epidemic and lose the kidney ".
Therefore, he called on the government to have an emergency protocol similar to that used in Spain, which reacts immediately to cases, avoiding the patient to lose a kidney and thus leaving no consequences that imply that the person lives with dialysis
girl, the product of an outbreak occurred in 2015, was left with chronic renal failure, hypertension very complex and other conditions such that an intracranial hypertension with which she almost lost her sight. If she had received the medicine on time, she would have had no harm (…) now she must use it for life. "
Jadrievic added that it is vital to save at least penis life as the drug is administered as soon as possible, not only because it has not occurred. side effects, but also because the use of the drug could be positive in the case of a kidney transplant
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