ICD-9 Codes

[Guest guest]

perhaps everyone knows this but this was new news to me today. Proper coding will bring us more accurate numbers of who many are affected by this horrific disease. If your physicians do not use these codes please ask them to. Funding and thus research will only come once we can show that a lot more people are living and dying from this disease than anyone knows. Anne Juhlmann~mom to 4 wonderful kids with mito This is from a state epidemiologist: FYI - I checked the 2005 ICD-9-CM coding manual, and found the following codes (new to the 2005 edition - I.e., effective Oct 1, 2004 and forward): 277.87 Disorders of mitochondrial metabolism (includes Kearns-Sayre Syndrome; Mitochondrial Encephalopathy, Lactic Acidosis and Stroke-like episodes [MELAS syndrome]; Mitochondrial Neurogastrointestinal Encephalopathy syndrome [MERRF syndrome]; and Neuropathy, Ataxia and Retinitis Pigmentosa [NARP syndrome]) There are additional codes to be used for associated conditions, e.g., Leber's optic atrophy, Leigh's subacute necrotizing encepalopathy, etc.