Need Advice

[Guest guest]

Hi All,

I'm fairly new here & have mostly just been reading everyone's posts to gain

information but I have a situation I need some advice on.

I'm 52 & have had CMT since I was a child along with 2 sisters. I wasn't

diagnosed until I was 48. Before that time, as far as I know, no one in my

immediate family knew what we had. My mother & 1 of my affected sisters had

already passed away. All my life my mother had told us the Dr. said our problems

were caused by the polio vaccine, which I never really believed.

After I was diagnosed, some of my mother's family contacted me to let me know

they had family members with CMT, so I know that it came from my mother. She

showed no signs of it other than high arches most of her life, but looking back

now I realize that she started finding it difficult to walk without holding on

to something in her early 70's so she may have been beginning to show symptoms

but we just didn't see it at the time. She died of cancer at 78.

I say all this to show that in my family the parent was affected very mildly &

much later in life. The children were affected much more severely & around the

age of 6 yrs. My 2 affected sisters & I have children ranging in age from 29 to

33 yrs old who up until now had not shown any symptoms. I had hoped they were

safe at this age, even though I knew better.

My 32 yr old niece, who is the daughter of the sister who has passed away, was

visiting recently. I don't see her often since she lives out of state. I noticed

that she had very high arches & her toes were curled. I'm not even sure she's

aware that her mother had CMT or that it's hereditary, since her mother passed

away before we knew.

I need advice on whether to discuss this with her or wait until she realizes

somethings not right & asks. I don't want to worry her because she has 2 small

children & a newborn so I don't think she needs more stress. I'm not even sure

she has a problem but my sister-in-law noticed her feet also. I don't want to

call her up & say, " We noticed your feet look strange. Did you know you could

have what your mother had & you might have passed it on to your children too? " I

almost feel that my not knowing that I had something hereditary all those years

was better because I didn't worry about my children.

Also, since she is just now showing signs, she may be like my mother & not

really suffer any real problems with it until she's much older. I never noticed

my moms toes being curled though, so that might indicate her being a little more

severely affected than my mother.

Some of my family says I shouldn't say anything to her while others say I should

so that she can get medical care as soon as possible if she does have CMT. My

sisters & I didn't receive any medical treatment until we had severe foot

deformities. I certainly wouldn't want my niece to wait that long. Those that

tell me not to say anything to her say she'll notice before it gets too bad &

ask about it.

I just don't know what to do & along with stressing about this, seeing her show

signs of CMT makes me realize that my children who are only a few years younger

than her could still be at risk even though they seem fine now. I also worry

about my grandchildren. I just keep telling myself that a life with CMT, with

proper medical care & knowledge wouldn't be as hard on someone today as it was

when I was a child. Who knows, they might find a cure soon. I hope. Anyway, I'm

sorry this is so long. I would really appreciate any advice on IF & HOW I should

discuss CMT with my niece.

Thanks,

Jan