RES: Brazil CMT persons introduction!

[Guest guest]

> Hello Gretchen,

> Always is very fine hear about you, some day I will have the pleasure of

> meet you. I don't understand when you said " and some need help to hear " . I

> understand that some CMTes need equipment to hear, is it?

>

> I still don't have the email of Marcel (the brazilian), I would like very

> much talk with him, please let me know his email.

> Very nice talk wih you,

> Murilo. (murilo@... or murilo.lion@...)

>

> [Murilo da Cunha Bessada Lion]

>

>

> Hi Marcel and (Murilo),

>

> Glad to hear from you. Becky DID give me the Type 3 links and just

> in

> case she didn't send to you, I will again in another email. I also

> have

> a woman on our discussion list who lives in Brazil and she has

> CMT, Marcel. Her name is Murilo and I am sending this email to her

> also

> so you can see her email address and perhaps be in touch regarding

> CMT.

> I know Brazil is a large country, but maybe you live nearby!

>

> I would strongly suggest you DO contact that Athena Diagnostics lab.

> They do genetic testing. In my case, neither parent had CMT. I am a

> 'spontaneous mutation' type. However, if I chose to have children,

> there

> is a good chance I would pass it on to my offspring. I was diagnosed

> as

> a child at age 10 with CMT and even though my CMT is considered

> mild,

> some of the things I had to go through were horrible, and I could

> never

> put a child through that OR endure that with my child.

>

> Marcel, please be careful. I understand how much , you, and

> your

> wife would like another child. The genetic counselors tell people it

> is

> OK. How do they know? As you said, you do not even have an exact CMT

> Type 3 confirmation. YOU MUST get that before deciding on having

> another

> child. Also, I recommend adoption of infants from a private agency

> or

> Catholic home of some sort.

>

> One of my friends, she is 35, she has 5 children... She has CMT. The

> doctors TOLD HER SHE could have children and they would NOT have

> CMT!

> Alas. Four of her five children have CMT. 3 boys and a girl.

>

> Marcel, please DO think about joining the email discussion

> list.

> There are alot of parents with CMT children there plus alot of

> 'personal

> life experience' with CMT. Another friend from the list who lives in

> England was diaagnosed Type 3 as a child, as were her two twin

> sisters.

> Now she is in her 30's and they have just found out that diagnosis

> was a

> mistake, she does NOT have Type 3, but Type 1A.

>

> The medical people still don't know everything; it is such a shame

> you

> had such a neegative response from the people you tried too contact

> in

> the States. I am truly embarrassed by this.

>

> Has had a spinal tap? A muscle/nerve biopsy? These can help in

> the

> diagnosing as they can either rule out CMT or give more indication

> towards CMT. Marcel, there are thousands of neurodegenerative

> diseases.

> If you don't now have a CMT Type 3 Confirmation, may I ask how you

> found

> that out? How did the Dr. decide this was what has?

>

> I am sorry for the questions, but having a child with CMT is

> difficult,

> being the child with CMT is even harder.

>

> Many CMT persons need equipment for walking. And some need help to

> hear.

> There are 53 types of CMT now. Only one can be diagnosed

> pre-natally.

>

> Keep fighting for a correct diagnosis!

>

> There is a Dr. Engel, at the University of Southern California

> Medical/Health Center who is known for his good work with CMT. I

> suggest

> perhaps you contact him, it might be a good idea to bring for

> evaluation. Just look up University of Southern California.edu on

> the

> Internet and under the Medical Center to find him. If you cannot,

> let me

> know. Then I'll try.

>

> Hope maybe you and Murilo can meet and exchange ideas about CMT.

> Marcel,

> our discussion group is at http://www..groups.com/group/

> we

> would love you to join. It is free, no cost and a terrific way to

> learn

> more how to help and how CMT people have a good and positive

> quality of life.

>

> Sincerely,

> Gretchen Glick

> Solvang, California USA