Treatment
Medical advice on treatment
« Treatment should be started as early as possible and continued life-long to protect kidneys and extra-renal organs from the devastating effects of the disease. Treatment helps cystinosis patients to have full life, following normal education, having relationships, job and social contacts.
Consult your physician if you suffer from side effects such as abdominal pain, bad breath odor or skin lesions. Your family and friends are important in helping you to follow your treatment in your everyday life.»
Successful treatment of nephropathic cystinosis depends on early diagnosis and effective treatment which consists of supportive therapy and specific therapy. While supportive therapy aims to meet losses of fluid and electrolytes and renal function loss specific treatment with cystine depleting agents commenced as soon as the diagnosis made, significantly slows the progression of end stage renal failure. In untreated nephropathic cystinosis renal functions gradually deteriorates and results in renal failure at around 10 years of age but the appropriate cystine depleting treatment can delay progression to end stage renal failure.»
