Re: Please, your thoughts

[Guest guest]

Leena,

Regenerative medicine does offer much promise. I looked at the site you

provided. My thoughts on this is that the use of stem cells * may be * a way to

slow skeletal muscle atrophy. However, to completely arrest CMT, I believe this

would require genetic engineering of DNA in vitro. Dr. Shy's presentation at the

SGL conference skimmed over 'the future' that included RNA work and genetic

engineering, but this is a long way off.

The use of Stem Cell therapy is going on all over the world. Didn't we recently

hear from Caroline about the man who had it in China?

Personally, I don't want to be a guinea pig for research, nor would I travel out

of the US for 'medical reasons'. Nor do I recommend it, but those are only my

thoughts.

You can look into the California Institute for Regenerative Medicine too. Work

is being done on Diabetes Type 1 and others. http://www.cirm.ca.gov/

As for the earlier post by Bob, Dr. Dellon has done work in peripheral nerve

decompression (also in Diabetic Neuropathy) but this has no translation to CMT -

yet. Again, remember CMT is a 6-7 million year old disease. To arrest CMT

completely, the solution needs to be genetic in kind. We are in the infancy of *

treatment * for CMT, as we have seen with NT-3 and the current Ascorbic Acid

trials.

HTS offers much in targeting candidate medications too, but this is still on the

cutting edge of translational medicine.

Gretchen

[Guest guest]

Hi Gretchen,

I saw part of a TV program (could have been 20/20 or Dateline) recently

regarding a scam which involved (so called) Doctors offering stem therapy to

" CURE " Parkinson's and MS. Apparently a lot of desperate people have parted

with a lot of money in hope for help with their conditions. Not saying this is

connected....just be really diligent in researching a program before parting

with any cash.

[Guest guest]

That was about stem cell 'clinics' that purport to put stem cells into patients'

bodies in 'new' ways that effect miraculous improvements. Actually these ways

have no basis in medical science. Despite the statistics regarding CMT,

apparently our profile has not attracted the scammers.

[Guest guest]

Must be nice to even HAVE the extra money to part with. We are JUST GETTING BY

LITERALLY every week. I wash the clothes in the tub and hang them. I can't

understand how all these disabled people have any extra money. I don't! Up until

yesterday we were going to the library to use the internet. 

The only reason I JUST NOW got internet at home is #1 I get a free month and #2

when my son's school is done in June, I am getting rid of it because it is for

my son's studies. What am I missing that disabled people have money to

experiment with things like vitamins or non-proven treatments? I really would

like to know! I'm not being angry or funny, I'm being serious. I feel like I'm

missing something here. (P.S. I have CMT 1A).

Dawn

[Guest guest]

It may be that some are less severely affected and are still able to hold down a

job, or they may have other family members who hold jobs. I have HNPP diagnosed

by genetic testing thru Athena Labs. It must be very hard to have to survive

w/o extra help.

Jeanne

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[Guest guest]

Jeanne,

Thanks for replying. I worked (tax paying jobs) from the time I was 16 until

just 3 years ago at 37. I say taxpaying because I worked before that

babysitting, etc. and during and since then as a mom. I really appreciate you

getting back to me. I think it is because of the severity of my disability

because now my hands are affected and even after I did home health for several

years, I could still type at least. Now with the hands, typing too long has

caused problems with my fingers, (contractures).

So, doing a job like that too much would be bad for me. Also, being a single

mom, I want to be here for my son when he'ls not in school. What I am thankful

for is just that. I can still drive him to and pick him up from school, and help

him figure out and understand his homework and memorizing and of course do all

the housework(but that parts not fun-the housework). Anyway, it is nice to have

someone to at least talk to about this. Thanks again.

Dawn

[Guest guest]

You know, Jeanne, I was thinking about what you said about extra help and what's

funny is that before I got married, I was completely on my own. I worked

as live-in maid while I went to college full time and also worked at the " Bengal

Burger " on the college campus.

Being a live-in maid saved me from having to pay rent and the fact that my

parents didn't want to help out so much wasn't a big factor. I now figure it was

because they didn't expect me to amount to so much.

When I graduated from college I got very little ($50)  compared

to what my sisters got, my older sister a car and later my younger sister a

video camera and lots of money. It didn't matter to me though I was happy being

independent and met a lot of people while in college.

Once I had my son, my parents figured they wanted to be more a part of my life

and now when they offer help, I resent it. I was practically starving on my own

and now they want to look like " Oh we always contributed. " , when the truth is,

they didn't!

That's why I still have this huge student loan over my head. So, I guess my

point is that I would not like extra help but to be able to get hired for a good

paying job where I can use my education because I put a lot into that part of

my life and despite working all the time always got A's.

Well, thanks for listening.

Dawn