Why?

July 23, 2001

In a message dated 7/23/01 10:21:16 PM Eastern Daylight Time,

homesforsalebycindy@... writes:

<< Please forgive my naivety but why are so many doctors ignorant about the

facts of CMT bearing in mind how common it is. >>

Hi Sue,

" the most common inherited disease " I think the word common in this case

is a misnomer. It might be common to us who have it and share information,

but surely not to others.

E

July 24, 2001

Seems that everytime I've ever went to the doctor, when my medical history is

reviewed, the practitioners say " Hmmm I've heard of that in medical school, but

I've never actually seen a patient with it " .

Then all of a sudden, CMT is interesting to them. This happens everytime I have

a new doctor and I go thru this ritual before being cared for a cold, flu, etc.

And I finally get my antibiotics and go home.

I have to say that when I was 9 years old, I feel very fortunate to have been

diagnosed and taken care of . I live near Vanderbilt University Medical Center

and Vanderbilt Childrens Hospital providing excellent care to patients.

J. www.homesinmiddletn.com

Sue Horder-Mason <sue@...> wrote: Please forgive my

naivety but why are so many doctors ignorant about the facts of CMT bearing in

mind how common it is. I thought this was just a problem in the UK but reading

your emails it seems to be universal. Can anyone please explain this?

Sue

Website www.horder-mason.freeserve.co.uk

Fiction Writer and CMTer

July 24, 2001

-----Original Message-----

From: jege6666@... <jege6666@...>

< >

Date: Monday, July 23, 2001 9:39 PM

Subject: Re: [] Why?

In a message dated 7/23/01 10:21:16 PM Eastern Daylight Time,

homesforsalebycindy@... writes:

<< Please forgive my naivety but why are so many doctors ignorant about the

facts of CMT bearing in mind how common it is. >>

Hi Sue,

" the most common inherited disease " I think the word common in this

case

is a misnomer. It might be common to us who have it and share information,

but surely not to others.

E

>>>>>>, yep, the most common UN-HEARD of inherited disease! LOL,

~>Becky M.

July 24, 2001

In a message dated 7/24/2001 9:47:24 AM Eastern Daylight Time,

rmax@... writes:

> It might be common to us who have it and share information,

> but surely not to others.

> E

> >>>>>>, yep, the most common UN-HEARD of inherited disease! LOL, ~

> >Becky M.

>

That's for sure. No one knows what it is if I tell them CMT. I just tell them

I have peripheral neuropathy. Lot of people don't even know what neuropathy

is.

July 24, 2001

I suspect that part of the problem is that CMTers have such widely varied

symptoms. It's like the blind man who tried to figure out what an elephant

was. When he felt each part, trunk, tail, leg, tusk, etc., he thought of a

different animal for each.

CMT is still being classified, and more varients are discovered all the time.

It's a syndrome rather than a single, easy to name or diagnose disease.

For example, I have muscular calves, low arches, progressive weakness and

neurological pain. I do not have atrophied calves or very high arches like

many of you have. I much prefer cool weather to hot, unlike many of you. Yet,

my neurologist guessed CMT right away, and confirmed it by tests, such as the

EMG (which was near normal, but showed damage to the core of my nerves, not

the myelin sheath). He also believed me when I told him about the pains I

have, and he said it wasn't uncommon. Both he and Dr. Bird, from whom I had

the diagnosis confirmed, agreed that CMT would run its course and progress

according to my preset version, regardless of what I did or didn't do,

provided I didn't stress myself a lot and aggravate the symptoms.

I originally had told my GP that my lower legs were numb like my mom's had

been, and she (Dr.) knew to send me to a neurologist for diagnosis.

Most doctors like to treat problems that they can cure, by the way, not ones

that make them feel helpless, like CMT.

Many CMTers have such mild symptoms they are never diagnosed. There are

probably far more of us than the medical community acknowledges.

Kat

July 24, 2001

Hi Sue,

Owen here,

I think when it is said " The most common inherited neuropathy " it means that it

the most common among the population with inherited neuropathys, that does not

mean it is common in the population as a whole. That said. I my case my family

was fortunate enough to have a family doctor ( MD / Surgeon ) whose wife had MS.

He had told my mother he spent most of his spare time looking for any lead to

help

his wife reading anything pertaining to diseases of the nerves. He had diagnosed

my mothers CMT in 1949. My point is that if the doctors do not have CMT in their

families OR have had a patient / (s) in the past with CMT you will have to be

the

educator. You have to aggressively research CMT and compile the information for

them. If we come across doctors that are to closed minded / arrogant to listen

we

have to look for another one and another one. This is OUR GREATEST PROBLEM how

to

EDUCATE THE DOCTORS world wide ABOUT CMT. Gretchen and are / have been

working on an awareness campaign its a start. We all must forge ahead! This is

not going to be easy but anything worthwhile never is.

I'm sorry I'll get of my soapbox now.

Happy Trails

Owen

Sue Horder-Mason wrote:

> Please forgive my naivety but why are so many doctors ignorant about the facts

> of CMT bearing in mind how common it is. I thought this was just a problem in

> the UK but reading your emails it seems to be universal. Can anyone please

> explain this?

> Sue

> Website www.horder-mason.freeserve.co.uk

> Fiction Writer and CMTer

>

July 24, 2001

Very good point Sue. My husband, who has CMT, and I, visited a neurologist a

few years back to see if there was anything that could be done for pain, and

just for a general checkup type of thing. The doctor knew of CMT, but had

never seen a case, and was more curious than anything else. He was really

nice though and talked with us about neurological conditons, but he did say

that my husband would have to see him when he actually was having a pain

epidsode, because CMT shouldn't have pain as a characteristic! It wasn't

until I started logging on and reading what has been written by other CMT

people that I found out he was wrong. Alot of misinformation is out there. I

have not so far come across a doctor that includes a CMT checkup as part of

Ross's regular care, they just kind of overlook it. Even the doctors seem to

treat it as invisible.

-----Original Message-----

From: Sue Horder-Mason [mailto:sue@...]

Sent: Monday, July 23, 2001 6:34 PM

Subject: [] Why?

Please forgive my naivety but why are so many doctors ignorant about the

facts of CMT bearing in mind how common it is. I thought this was just a

problem in the UK but reading your emails it seems to be universal. Can

anyone please explain this?

Sue

Website www.horder-mason.freeserve.co.uk

Fiction Writer and CMTer

July 24, 2001

I really would like to think of something to increase awareness...if the

lightbulb appears I will be very happy. Does the annual MDA telethon ever

mention anything about CMT on the air?

-----Original Message-----

From: Gretchen Glick [mailto:liliwigg@...]

Sent: Monday, July 23, 2001 11:09 PM

Subject: [] Why?

I have had good medical care for CMT ever since the Original Diagnosis

too, , back in the 60's. My best care hasa beeen from private

physicians who take the time to know the WHOLE PERSON, not just the

'case'. But I was also tested and observed for everything else

neurological in the University and MDA settings, since my 'case' doesn't

fit 'textbook CMT'. Wonder what is in the textbooks and wonder how the

textbooks are changing? And yes , the most common inherited

neurological disease NOW, but I wonder when that nomer actually came

into being. LOL I still can't find a single 'case' of CMT in my family.

Looks like Norma Rae haas more work to do!!! I wish I could come up with

a good 'game plan' on educating doctors about CMT. I mean ALL about it.

Ideas - please send.

~ Gretchen

July 24, 2001

,

Lamar here,

Yes, CMT is mentioned but there is no emphasis on it. The reason is

understandable when you look at the fact that the entire telethon is an

appeal. Let's face it they do and have to pull at " heart strings " . A child

with only a few years to live gets more public sympathy than a disease like

CMT. While CMT can be life threatening in some cases, it usually is not.

As bad as it is, it is not as bad as many neuromuscular diseases. While

there are many things about MDA that I do not fully agree to, they have been

the major source of funding for most of the research that has been done on

CMT.

----- Original Message -----

From: Insabella,

' '

Sent: Tuesday, July 24, 2001 09:42 AM

Subject: RE: [] Why?

I really would like to think of something to increase awareness...if the

lightbulb appears I will be very happy. Does the annual MDA telethon ever

mention anything about CMT on the air?

-----Original Message-----

From: Gretchen Glick [mailto:liliwigg@...]

Sent: Monday, July 23, 2001 11:09 PM

Subject: [] Why?

I have had good medical care for CMT ever since the Original Diagnosis

too, , back in the 60's. My best care hasa beeen from private

physicians who take the time to know the WHOLE PERSON, not just the

'case'. But I was also tested and observed for everything else

neurological in the University and MDA settings, since my 'case' doesn't

fit 'textbook CMT'. Wonder what is in the textbooks and wonder how the

textbooks are changing? And yes , the most common inherited

neurological disease NOW, but I wonder when that nomer actually came

into being. LOL I still can't find a single 'case' of CMT in my family.

Looks like Norma Rae haas more work to do!!! I wish I could come up with

a good 'game plan' on educating doctors about CMT. I mean ALL about it.

Ideas - please send.

~ Gretchen

July 24, 2001

Owen,

Lamar here,

CMT is not only the most common inherited neuropathy. It is the most common

inherited disorder of the nervous system (neuromuscular disease).

http://www.mdausa.org/publications/Quest/q81cmtds.cfm (not as common as

" strokes " etc. The last figures I saw were (as I recall) 1 in 4000 people

on earth having CMT. Still many cases, especially those that have mild

symptoms are not properly diagnosed. You are correct about education

physicians, but as a retired nurse I will say that many physicians are

reluctant to be " educated " , especially by a lay person. Thankfully, there

are some exceptions. In my opinion we all need to play a part in educating

the public as a whole. We can all do this in our daily life. When the term

CMT becomes as well known as MD, AIDS, or even " foot and mouth disease " a

big portion of the battle will be won. While AIDS is NOT related to CMT in

any way, I will share something. I was one of 10 people selected by CDC and

the State of GA to teach all state employees about AIDS (HIV). This was

when it was still virtually unknown. Yes, I was even trained to teach the

physicians. The original 10 gave intensive training to 150 others. Then we

all did training. Most states had similar programs. The 56,000+ that got

intensive training on it in GA " rubbed off " on the general public. News

media helped. Now, less than 20 years later it is probably impossible to

find someone in the US that does not at least know what the term means. As

I said, we were not the only state doing this. A BIG portion of the public

education came from people with HIV infection. While I am not suggesting

organized classes about CMT nationwide, we can all do our part by learning

all we can and sharing all we can. We need to make sure the information we

give is accurate and up to date. We may each tell 100 people some about

CMT, but out of those 100 there will be some that will tell someone else.

It will not be overnight, but can happen. Saying, " I have a kind of

Muscular Dystrophy " (which is inaccurate to begin with), or " I have a

disease of the nerves " , or " I have a muscular disease " will not help.

----- Original Message -----

From: Owen

Sent: Tuesday, July 24, 2001 07:53 AM

Subject: Re: [] Why?

Hi Sue,

Owen here,

I think when it is said " The most common inherited neuropathy " it means

that it

the most common among the population with inherited neuropathys, that does

not

mean it is common in the population as a whole. That said. I my case my

family

was fortunate enough to have a family doctor ( MD / Surgeon ) whose wife

had MS.

He had told my mother he spent most of his spare time looking for any lead

to help

his wife reading anything pertaining to diseases of the nerves. He had

diagnosed

my mothers CMT in 1949. My point is that if the doctors do not have CMT in

their

families OR have had a patient / (s) in the past with CMT you will have to

be the

educator. You have to aggressively research CMT and compile the

information for

them. If we come across doctors that are to closed minded / arrogant to

listen we

have to look for another one and another one. This is OUR GREATEST

PROBLEM how to

EDUCATE THE DOCTORS world wide ABOUT CMT. Gretchen and are / have

been

working on an awareness campaign its a start. We all must forge ahead!

This is

not going to be easy but anything worthwhile never is.

I'm sorry I'll get of my soapbox now.

Happy Trails

Owen

Sue Horder-Mason wrote:

> Please forgive my naivety but why are so many doctors ignorant about the

facts

> of CMT bearing in mind how common it is. I thought this was just a

problem in

> the UK but reading your emails it seems to be universal. Can anyone

please

> explain this?

> Sue

> Website www.horder-mason.freeserve.co.uk

> Fiction Writer and CMTer

>

July 24, 2001

> I really would like to think of something to increase

awareness...if the

> lightbulb appears I will be very happy. Does the annual MDA

telethon ever

> mention anything about CMT on the air?

>

,

CMT is mentioned on the MDA telethons - it takes it's place along

with over 40 other neuromuscular diseases.

My family has been involved with the MDA telethon at the local level

for the last 2 years - this year will be our 3rd. My daughter was

the 2000 MDA Goodwill Ambassador for Eastern North Carolina. In

1999, our local TV station did a 3 minute (more or less) feature on

her that was taped at our house. We also did a studio interview with

one of the local telethon anchors the day of the telethon when the

human interest piece was originally aired. Last year (2000) my

daughter and I did a 15 minute studio interview segment for a 1/2

hour public service promo that aired on the TV station the day before

the telethon. We also did an impromptu interview during the telethon

as were answering telephones during a local cut in.

All these opportunities became available because we were involved as

patients in the MDA clinic program, or as campers in the camp

program, or because of the volunteer effort in the ambassador program

and during the telethon. Whenever we are on an MDA-related outing, I

have been able to mention CMT specifically. That has included

meeting 3 mayors, MANY firefighters, as well as the exposure from the

TV-related opportunities. I have also been able to bring it up on

occasion on 1 or 2 stock car racing internet boards that I belong to.

This year we will be in the WTVD studio in Durham again answering

telephones during the afternoon shift of the telethon. It may very

well bring up another opportunity for an off-the-cuff interview.

The anchors look for stories to help them fill the air time during

the local cut-ins.

Ruth Warren

Raleigh, NC

July 24, 2001

Wow, what a positve message. I applaud you and your family.

-----Original Message-----

From: warrenre@... [mailto:warrenre@...]

Sent: Tuesday, July 24, 2001 2:26 PM

Subject: [] Re: Why?