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Re: CMT and HNPP

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Since HNPP is a deletion in the region of containing PMP 22 and this deleted

region is identical to region duplicated in CMT IA it is dominantly inherited.

http://neuromuscular.wustl.edu/time/hmsn.html#pp

20% of Persons affected with HNPP & PMP-22 deletion have de novo mutation (a

genetic mutation that neither parent possessed nor transmitted, also known as

'spontaneous mutationnnnn')

http://en.wikipedia.org/wiki/De_novo

http://en.wikipedia.org/wiki/Mutation

http://www.charcot-marie-tooth.org/about_cmt/hnpp.php

http://www.hnpp.org/

http://www.hnpp.org/genetics.htm

http://www.hnpp.org/gentest.htm

For more info contact a genetic counselor.

>

> What would happen if one parent had CMT and the other had HNPP?

> Or if both parents had HNPP?

>

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so people with cmt1a have hnpp, that is what has been happening to me, arm hand

legs feet going to sleep all the time. i dont have to be doing anything and they

go to sleep, it wakes me up at night all the time.

From:

Date: Sat, 1 Aug 2009 17:23:04 +0000

Subject: Re: CMT and HNPP

Since HNPP is a deletion in the region of containing PMP 22 and this deleted

region is identical to region duplicated in CMT IA it is dominantly inherited.

http://neuromuscular.wustl.edu/time/hmsn.html#pp

20% of Persons affected with HNPP & PMP-22 deletion have de novo mutation (a

genetic mutation that neither parent possessed nor transmitted, also known as

'spontaneous mutationnnnn')

http://en.wikipedia.org/wiki/De_novo

http://en.wikipedia.org/wiki/Mutation

http://www.charcot-marie-tooth.org/about_cmt/hnpp.php

http://www.hnpp.org/

http://www.hnpp.org/genetics.htm

http://www.hnpp.org/gentest.htm

For more info contact a genetic counselor.

>

> What would happen if one parent had CMT and the other had HNPP?

> Or if both parents had HNPP?

>

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This is an interesting question though.  What would happen if a person inherited

CMT1A from one parent and HNPP from the other parent?

 

Both diseases are autosomal dominant and they both impact the same gene, but one

creates an over-duplication problem while the other creates a deletion issue. 

Would they offset each other?  I know genetics aren't that simple, but it is an

interesting supposition.  My guess is that CMT1A would likely dominate, as a

more complete defect, but it's just a guess.

 

What if they did offset each other and it could actually lead to a cure by

introducing one into the other through genetic engineering?  I know I'm wildly

speculating, but I found it an interesting question.

 

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It's a cool idea. My neuro for 5 years thought I had CMT, only after the

Athena Labs test was it determined I have HNPP. I have a very unstable gait

(walk like s drunk) with zero bslance so I use a 4-wheel walker, severe numbness

below knees and hands, very weak hips so I can't walk too far, tire easily, my

fingers feel like jelly and the tips are numb, I have drop foot and hammer toes,

really lots of the same issues as CMT.

That's why my doc said it's hard to tell exactly which one you have without

genetic testing. But the bottom line is, both are debilitating; so I'd love to

see a study on playing with that gene. The only benefit with HNPP, for me at

least, is I do not have any pain, I just don't have any feeling. But I know

people with cancer, so I can't complain too much. I guess it could always be

worse.

Jeanne

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,

this is what I was wondering about. would they cancel eachother out? would they

create a 'new' genetic disorder? I also wonder what would ahppen if both parents

habe CMT or if both parents have HNPP.

I am curious because I have HNPP. I inhereted it from my father. But at first I

thought I inhereted it from my mother because she has SEROIUS high arches and

hammer toes and a few of the other symptoms. this was my assumption until I

contaced my bio father and found out he has serious neuro problems.

Bree-Anne

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I'm just the opposite (not in symptoms but diagnosis). I had self diagnosed HNPP

and convinced my neuro to do the genetic test for it. She ordered the peripheral

neuropathy panel and wouldn't you know it, CMT. Well, I was pretty close, same

chromosome, same gene even.

Holli

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Hi Bree-Anne,

 

These are very good questions.  You mention that you have HNPP.  Was that

diagnosed through genetic testing?  Have either of your parents been diagnosed

with HNPP or CMT through genetic testing?  What does your neurologist think

about this situation?

 

Even if both parents have CMT or HNPP, it doesn't necessarily mean you got two

bad genes.  There's a 50% chance you inherited one bad gene for either parent,

but only a 25% chance you were lucky enough to get both of their bad genes.  If

you do have two bad genes, I'm sure your situation would be one the medical

community would be quite interested in evaluating, since it's very rare.

 

If it were me and insurance would cover it, I'd try to get as much medical

information from each of my parents as I could, i.e. Nerve Conduction

Velocity/EMG test results, any genetic testing results, clinical reports, etc.,

and take it to my neurologist for evaluation and try to get an answer, if

possible, for myself through genetic testing.  Since testing for every currently

identifiable type of CMT in addition to HNPP can be expensive, the neurologist

may be able to look at the combined medical information of all three of you and

rule some things out automatically.

 

Once you have an accurate diagnosis for yourself through genetic testing, then

you may be able to get more answers.

 

In addition, if you are thinking about having children in the future, you may

want to know if you carry two defective genes.  If you have two defective genes

of the same type, i.e. two HNPP genes or two CMT1A genes, one from each parent,

then you would have a 100% chance of passing a defective gene on to your

children, which could be helpful information to know if you do have kids.

 

Hopefully your doctor can help you find some answers.  If so and you're

comfortable sharing with us, it would be interesting to hear what you find out.

 

From: scottbree <scottbree@...>

Subject: Re: CMT and HNPP

Date: Tuesday, August 4, 2009, 6:41 AM

 

,

this is what I was wondering about. would they cancel eachother out? would they

create a 'new' genetic disorder? I also wonder what would ahppen if both parents

habe CMT or if both parents have HNPP.

I am curious because I have HNPP. I inhereted it from my father. But at first I

thought I inhereted it from my mother because she has SEROIUS high arches and

hammer toes and a few of the other symptoms. this was my assumption until I

contaced my bio father and found out he has serious neuro problems.

Bree-Anne

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