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Support Groups For Cystic Fibrosis
Cancer society: They will point you in the right direction. ...Read more
Depends on Lung Fx: The level of physical activity for a child with CF is an individual choice that should be made in consultation with the treating physician. However, there has been some interesting research done in australia, which suggests Hypertonic Saline (e.g., salty air) inhalation in CF patients was beneficial in maintaining lung function. Why? A doctor noticed surfers with CF tend to have better outcomes! ...Read moreSee 1 more doctor answer
No and yes: Safe effective gene therapy for CF is a dream that we have yet to realize, but there are many excellent CF centers in the us. The CF foundation is an excellent source of information on these centers. The treatments for CF are improving, and expanding constantly. The life expectancy for patients with CF has steadily increased but is still limited by pulmonary disease. ...Read more
So far not at all: Trying to replace the faulty gene has been a failure so far. The new science of epigenetics tells us that our genes (even "bad" ones) are changed by diet and life style. I havegiven children with CF vitamin supplements. They help greatly but there is no cure. Find a physician who uses nutrient treatment. ...Read more
Look online: Since mitochondrial disorders are still considered rare disease entities, support groups at a local level would be very dificult to find. I suggest you go online to some of the big centers in the us who deal with the diagnosis and treatment of these disorders (ie. Children's hospital of philidelphia, cleveland clinic) and see if they have online support groups and parental geoups. ...Read more
Depends: There seems to be a confusion in your mind about physical dependence and addiction. Addiction is psychological dependence on the substance not for controlling the pain but feeling good. Pain is not the issue in such cases and usually illegal means employed to obtain the substance. For such persons there are detox clinics followed by support group. If you obtain opioids for pain, no need for group. ...Read more
Trials: Clinical trials for genetic therapy are underway. As of this time there is no approved method for gene tx in cf. Kalydeco, (ivacaftor) a new drug, dose reverse the effects of one subtype of cf, but it dose so by aiding the damaged sodium-chloride transporter to get in proper position and function normally. ...Read moreSee 1 more doctor answer
Yes: Contact you local hospital or health department for details. ...Read more
Two 12 Step groups: You might want to consider attending a meeting of survivors of incest anonymous (sia) and/or incest survivors anonymous (isa) the most important difference is that anyone who has been a perpetrator is asked not to attend isa even if the perpetrator was also a victim of incest. ...Read moreSee 2 more doctor answers
Yes: Try - http://www.Blindness.Org/.Get a more detailed answer ›
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