UK mito referral center

[Guest guest]

I recall a couple of UK-based questions herein recently, so I'm pasting this

below (note the last two sentences), from Q&A (on another subject) at

http://www.mdausa.org/experts/viewall.cfm?id=98

Steve D.

REPLY from MDA: Salvatore DiMauro, M.D., Columbia University College of

Physicians & Surgeons, New York, N.Y.

I am sorry to say that MERRF (myoclonus epilepsy with ragged red fibers)

usually does progress, although -- as is typical of mitochondrial diseases -

the rate of progression varies considerably from case to case. I would have

to know more about your son's clinical picture (are seizures under good

control? does he use a wheelchair because of myoclonus, muscle weakness,

peripheral neuropathy, ataxia, or all of the above? is his cognitive

function normal?) to assess his ability to live independently. In the UK,

there is an outstanding referral center for mitochondrial diseases in

Newcastle upon Tyne. I would urge you to contact Professors s

Turnbull, Chinnery or .