Re: curious, why or how the first person in my family had CMT?

[Guest guest]

Hello Caroline,

There has been documented a spontaneous appearance of CMT in about 6% of

the cases. Another observation is that CMT occurs in all races and

countries. One in 2500 in the USA is a number accepted but local areas

can differ as I have been told that one in 800 applies to the northeast

states amongst french speaking population. The variability of symptoms

also bears on the apparent incidence as some are so lightly effected that they

are unaware of the condition.

EdM from NH

____________________________________________________________

[Guest guest]

Caroline,

Over a decade of research studies on chimpanzees and gorillas suggests that CMT

gene has been with our human family for six to seven million years. Think of all

the generations of families producing offspring, those offspring marrying and

concieving, etc. Plus there has been intermarriage between families.

We tend, or at least I tend to observe only as far back as my grandparents,

however, as they are deceased, I won't ever know, really. I do remember one

grandmother (maternal side) talking about her 13 siblings, and there was no

indication of anything like CMT. I did some ancestor research when I was in

school in Kusnact and Einselden on my paternal family side, but came up with

nothing.

Even for a recessive gene to show up in me, on either side of my family or

origin, it would have shown up again somewhere else. Even among distant cousins

and their families. So far nothing.

So my only thoughts of where did I get CMT from is being born a member of the

human family, or it is possible I have a mutation that is not known at this time

(I have some sort of a Type 2 diagnosis according to EMG/NCV tests showing all

normal readings with reinnervation) but now my neurologist believes I have a de

novo mutation.

Gretchen

[Guest guest]

I was told when I was a little girl that becuase I did bad things in my previous

life and thus I am cursed to have a mysterious disease. All my family did bad

things and thus the whole family has a mysterious disease.

Fortunately, I find this CMT online group and realize that what I was told was

not true.

Caroline

[Guest guest]

Caroline,

I too thought I had CMT because I had been bad. I am of Caucasian, Northeran

European lineage. But did not pick this up from that, since my childhood

diagnosis as accepted by my family. I just turned my diagnosis inward, I know I

had been bad (playing rough with my brother, walking to the store for candy on

the way home from school, and the worst one was deciding I no longer believed in

God, so I would not go to Sunday school) hence, my young thinking was " I'm being

punished " . The solutions for escape from that defeatist thinking were with my

friends Cuervo and Jim Beam. But through them, in and up on the other side,

at age 27, I deleted the defeatism and sought spiritual healing through the 12

Steps. I had to walk through the eye of the needle to get where I am today.

Gretchen

[Guest guest]

Carolyn, I'm so sorry that uninformed people would tell you such a thing - that

CMT is from being " bad " . I'm glad that you have found the group and now know

that it's just a little quirk of nature and has nothing whatsoever to do with

morality. Just chemistry and biology. I don't understand the need to blame the

people who are suffering for their situation. Stuff just happens, that's all.

As Gretchen points out, this gene mutation (or group of mutations really) has

been around essentially since the dawn of humanity. If we really look at it

objectively it is small potatoes compared to things like Tay Sachs disease or

Cystic Fibrosis. That is also why CMT is a little more " mysterious " . Not because

it is all that unusual, because it turns out it's not unusual at all! There are

LOTS of us living with it (a long full life, thank you) and even more who live

with it and don't even know it.

In my family, I can trace it back to my paternal grandmother. Beyond that I

don't have any information. Her family came from Whales in the UK. But in my

case, when I'd complain about losing the feeling in my fingers for weeks after a

bike ride or using scissors, my dad would say, " that is normal, happens to me

all the time " . He thought it was normal because that's what his mother told him,

because in her family, it was normal. She had the high arched feet and

hammertoes, so does Dad, so does my sister -- normal in my family. In fact, they

mostly find it amusing that I have persisted with " this is not normal " and

gotten a diagnosis. I let them all know that this has a name and they nod and

smile and say, " ok, that's nice " . It's really not like anything has changed

afterall.

I guess that is almost the opposite of your experience, Carolyn. But it seems

this mutation is a human condition, not partial to a particular ethnic group.

Welcome to our group of morally average people with peripheral neuropathy .

Holli

>

> Dear friends,

>

> I am quite curious about why or how the first person in my family had CMT?

>

> I was born in Taiwan. My mom's family has CMT. As far as I know, all her

family members live in a small county in Taiwan. They never go overseas. They

are of Hakka origin.

>

> As far as I know, very limited people in Taiwan have CMT. I have not seen

anyone having CMT, besides my mom's family, in Taiwan.

>

> This is very mysterious for me.

>

[Guest guest]

I would guess through genetic mutation. That's how we think I received the gene

for CMT 2B which doesn't run in my family.

T.

>

> Dear friends,

>

> I am quite curious about why or how the first person in my family had CMT?

>

> I was born in Taiwan. My mom's family has CMT. As far as I know, all her

family members live in a small county in Taiwan. They never go overseas. They

are of Hakka origin.

>

> As far as I know, very limited people in Taiwan have CMT. I have not seen

anyone having CMT, besides my mom's family, in Taiwan.

>

> This is very mysterious for me.

>

[Guest guest]

Caroline, what you described is an attempt to identify the cause of a condition

when the available science cannot.

I went on several medical missions to do cleft lip/palate repairs in another

western Pacific rim country. I heard stories (sometimes directly, sometimes

through interpreters) that the cause was a curse from a witch, or that the child

was conceived during a certain phase of the moon or during a certain time of the

year, or to evil done in a previous life, or to evil done by one or both of the

parents, or .... to too many other alleged reasons.

For perspective, what we now consider first-rate science and current practice

may appear quaint 100 years from now ... perhaps even sooner.

>

> I was told when I was a little girl that becuase I did bad things in my

previous life and thus I am cursed to have a mysterious disease. All my family

did bad things and thus the whole family has a mysterious disease.

>

> Fortunately, I find this CMT online group and realize that what I was told was

not true.

>

> Caroline

[Guest guest]

Caroline,

Wow, that was not a nice thing to say not true either! The genetic cause for CMT

is a mutation. The first person in your family with CMT had a mutation, probably

a spontanious one, in a gene that encodes myelin or similar. Mutations in the

DNA occur all the time, sometimes they are beneficial, sometimes not. So the

truth is, you have not done anything to get this disease, neither did your

ancestor. It just happened!

Same as if two families go skiing, and one of the kids breaks his leg. The

circumstances are the same,but one family will need to see a doctor, struggle

with plaster and the other will go home after a great holiday! Life is

unpredictable. We can't influence accidents and diseases by doing, saying or

thinking bad things!

Beata