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MyMyo Foundation, which grew out of an initiative group of parents of children with Duchenne myodystrophy, dreams of creating a neuromuscular center where children with DMD from any city in USA could come for examination and rehabilitation. In the meantime, the foundation does what it can - it buys rehabilitation equipment for children (DMD is one of the most expensive diseases in the world), conducts psychological rehabilitation and integration camps, trains specialists, and organizes examinations for children.
Elena Shepherd, co-founder of the MyMyo Foundation and mother of a boy with Duchenne myodystrophy, spoke about the lack of medical care for children with DMD in Russia and what needs to be done to change the situation.
"Let's start at the beginning, with the diagnosis of the child. When we get sick and go to the clinic with some complaints, they (for example) say, 'You have otitis media, let's do this and this.
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And when you go to the doctor and are told that your child has Duchenne myodystrophy, then you hear from the doctor the following words in a different sequence: "The disease cannot be cured, he will die, get another one, we can't help him. This is the first step in the life of a family who has just learned of their child's diagnosis. And the first mistake of our health care that needs to be corrected. This is the beginning of a funeral.
Such a protracted, years-long funeral for one's own child. Because other than the fact that the disease is undetectable and your son is going to die, they didn't tell you anything. That's what they sent you home with.
The second problem, which follows the first, is the problem of isolation, loneliness, abandonment. Abandonment, because you are not supported by medicine, because you are in a very bad state of stress, and there is no one around who can help you psychologically. For example, a month ago we received a letter: "Three days ago we found out that our son has duchenne myodystrophy. We live in St. Petersburg. Right now it's hard to accept all this. Maybe you can recommend specialists or a support center or something else, I just don't know where to go and who to talk to.
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First of all, this applies to those who by their vocation or professional activity should provide support and assistance. That is, doctors. But there are only a few doctors who understand the disease. Next are the medical officials (specialists of medical and social expertise).
They give (sometimes, literally, "with a fight") a child a disability and prescribe an individual rehabilitation program, which, when applied to children with DMD, is nothing more than a formality.
Because such a rare disease, which runs with conditions that are often life-threatening, requires a special approach and rehabilitation/habilitation measures, which are not available.
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To use it in the future for compresses, you need to prepare an alcohol tincture, to which add finely chopped garlic.
- It must be insisted for 2-3 days, and then strain and refrigerate, carefully closing.
- And there are a lot of assistive devices that can support children, but are not available in Russia: for example, an exoskeleton or exoruche, such a technical device, a device that allows you to be independent, that gives back mobility to your hands.
- Before lubricating the skin, it is recommended to dilute the infusion in distilled water; eleutherococcus.
- This is habilitation.
- It helps to improve the general state of immunity; eucalyptus leaves, horsetail, and birch buds.
- This must be collected in equal parts and pour boiled hot water.
- St. John's wort or lemon balm can also be added to the decoction.
- Take this decoction orally, 60 grams after each meal.
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The first is diagnosis. This is the stage that sets the leitmotif for the life of a child with DMD and his family. This determines how quickly the person will recover from the state of stress and return to life.
The second thing is medical support, medical care. There is no such thing. It has to be multidisciplinary.
You need to call one specialist from here and another from here, you need them to interact. For example, Cushing's syndrome.
Often, the disease leads to the development of purulent complications in the primary localization of actinomycosis foci. A synonym for the disease is radiant fungal disease.
The first side effect of steroids is weight gain and puffiness, swelling of the face. When I look at photos of American and European boys with DMD, I don't often see such faces. And then I remember our boys...
A special sign is visible from the name - the growth of mushrooms is accompanied by the formation of mycelium (or colonies) in the form of filaments (druze) with thickenings at the end (looking like a cone), arranged in rays. Microscopy of the material with staining (hematoxylin-eosin) reveals staining of the filaments of fungi in blue, and thickenings in pink, in connection with which the colonies acquire a peculiar appearance.
The causative agent of the disease are specific microorganisms - radiant fungi of the genus Actinomyces (actinomycetes) of several species (Actinomycesalbus, A. bovis, A. candidus, A. israelii, violaceus).
For many years, there has been a Gold Standard for the management of patients with DMD abroad, with hundreds of neuromuscular centers. We try to take this long-term experience into account in our work and adhere to the standards at the "MDD Clinic" (MyMyo Foundation program for the examination of children with Duchenne myodystrophy).