14 DAY TRIAL // Sensory and autonomic neuropathies refer to a series of conditions that are characterized by an almost complete lack of sense, both of the inner organs and the outside skin, which means that children suffering from it don't realize when they have to eat or go to the bathroom, and they don't feel burns, cuts and pressure on their bodies. Living with the disease is a burden both to them and their parents, who have to keep the children under 24/7 surveillance, so as to keep them away from injuries.
“The science is being worked out as we speak. With modern medical care, in general, it is not a life-threatening illness. But it can cause a lot of complications,” says neurology and pediatrics specialist, Dr. Nancy Kuntz, from the Mayo Clinic.
A difficult task for doctors is to answer the question “How long does my child have left to live?” There is, as of yet, no accurate answer to this question, because, theoretically, these children could have an almost-normal life, if they manage to become “creative” in dealing with their condition. The most important thing, experts say, is to make them aware of the actions that could harm them.
Parents of children suffering from neuropathies managed to get together and create support groups throughout the United States, which allowed them to give each other tips and pieces of advice on how to better deal with their kids' situations. Families can feel desolated if they experience this disease, because even most doctors have no idea on how to deal with these affected children.
During the support group meetings kids get to meet young adults, who are also suffering the effect of neuropathies, which can give them confidence in themselves. This also benefits parents, who feel reassured that their children could make it to their teen years as well.