if the causes of (c.m.t) are 1- genes 2- myelin degeneration and deterioration or axonal : so it.s seem not very difficult to treat (cmt)

[bawadry]

[CMTUnitedKindom Partner]

It's an incredibly difficult thing to treat, I'm afraid. There are 51 (at the last count) genes causing CMT, and each one causes a different problem with the way the nerves function.

All types of Type 1 cause myelin deterioration of various kinds, but these don't cause problems until the axons become damaged by this deterioration.

Type 1a is especially complicated, because there are three copies of the gene rather than two - and it's incredibly hard to "turn off" the overexpression of that protein, PMP22 - it's easy to insert (in a way) something that's missing in a gene, but you can't take something away....

Hope this explains the situation, and why it's taking SO long to find a treatment.

Karen

[bawadry in reply to CMTUnitedKindom]

hi KarenCMT

I agree with you there is much difficulties but if the causes are lmiting so the treatment or researshs walk in the light and clear way .

[PhilC]

I do sometimes wonder if CMT causes mental impairment considering some of the insane comments on here

[gunner in reply to PhilC]

Hi philC i was just wondering what insane comments you are implying are insane ??

[Barry52]

I realise it's complicated but there is no concerted effort to help suffers compared to the approach regarding MS, there should be dedicated teams throughout the uk as Prof Reilly states 'it has to be managed to be manageable' currently the evidence does not support this

[bawadry in reply to Barry52]

I think (cmt) has not enough interesting from researsh centers but little so we need to support all effort in this direction

[John1945]

Hello to bawadry ....

Your comments given above, and I quote you, "if the causes of (c.m.t) are 1- genes 2- myelin degeneration and deterioration or axonal : so it.s seem NOT VERY DIFFICULT TO TREAT (cmt)":

This ill informed question, may cause some C.M.T. sufferers to be upset ?

Currently 23,000 citizens in the UK have been diagnosed with this NEUROLOGICAL DISEASE, many like myself, who have suffered it from birth 68 years ago : Currently there is NO CURE for C.M.T. nor is it fatal disease :

POSITIVE/MANAGEMENT/ADJUSTMENT ! of this disease, is currently the only "way forward", each individual sufferer alone must personally adjust, and manage their constant deterioration of their muscle/wasting/strength etc, and respond to their ever increasing lack of mobility ?

So sorry, as yet you cannot consult your G.P. and get a Pill, or an INJECTION to cure this most frustrating of Diseases, (alway call it a DISEASE - not a condition) : Many Doctors, and Health Professionals will never see a case of C.M.T. in their whole medical career:

[bawadry in reply to John1945]

what do you mean about ( pill , or an injection )

I agree with you it,s not fatal and deterioration is very slow and may stop itself

but we hope to find anything benefit improve or cure (cmt)

if you know any exercise ,nutrition, pills alternative meds etc tell us

I am from Syria 49 years old and we have very little cure to help

[John1945 in reply to bawadry]

Hello to bawadry ....

You are understandably are very frustrated that it is taking the medical profession so long to find a cure/treatment for CMT ?

It's an incredibly difficult disease to treat, one of the genes you inherited from one of your parents is defective:

There will be NO cure for this disease for many generations to come !

Professor Mary Reilly, has already stated, that Charcot-Marie-Tooth disease has,"managed to be manageable":

You, and you alone, must MANAGE your CMT: Yes their is plenty of help available out there to assist you, like Orthotics/Podiatry/Physiotherapy/counseling/etc:

[bev5985]

i fail to believe there is a pill or injection out there that will cure this disease in fact my physio stated to me a few months ago that cmt sufferers should not have any steriod injections at this could affect your disease even more

[John1945 in reply to bev5985]

Hello to bev5985.....

My point to 'bawardy, was Sorry, but at present there is NO! pill, or injection etc, available to cure, or relieve, or even to "slow-down" the onset of CMT :

Your information regards the use of steriod injections, is of particular concern and it should be confirmed by >

>Professor Mary Reilly, Professor Mary Reilly, Consultant Neurologist and Honorary Senior Lecturer, Centre for Neuromuscular Disease and Dept. of Molecular Neurosciences, National Hospital for Neurology and Neurosurgery and Institute of Neurology, London.

>Dr David Hilton-Jones, Clinical Director of the Oxford MDC Muscle & Nerve Centre and consultant neurologist at the Radcliffe Infirmary and honorary senior lecturer in the University of Oxford.

[bev5985]

i was actually pleading to have a cortisone injection just to give me some relief but that is what my physio told me that they have been advised not to inject cmt joints it would be nice if someone could qualify this