Having Children

[Guest guest]

My husband was diagnosed at age 32 when I was 8 1/2 months pregnant

with our son. Our son was later diagnosed at age 3 yrs via a blood

test. Both have CMT1a. My husband was devastated when he realized

he could/did give the disease to any children. In fact, against my

wishes, he had a vasectomy shortly after the birth of our son.

I tried to explain to him that there was a difference between his

childhood of not knowing (the pain, clumsiness, being called names,

not being understood) and our son's childhood of being aware of what

is wrong, what to expect, and having medical intervention. This did

little to convince him that he should not have a vasectomy. I felt

that it was ultimately his decision, and respect his choice.

However, I know he has regretted the decision, and wishes our son had

a sibling. But there are two sides to everything, and as mentioned

by others, my husband often doesn't have the energy to deal with

child raising. Since I work full-time, my husband has to handle the

child care issues.

I can definitely see both sides to the issue of having children, and

think everyone deserves to spend time with genetic councelors if they

are trying to make a decision about family. This could be one of the

biggest decisions of your life, you owe it to yourself, your spouse,

and your progeny to think out all the pros and cons. OR as someone

else said, leave it in the hands of God, and take gladly (and

cherish) whatever you receive in life.

[Guest guest]

Dear ,

I am highly impressed by your child-birth broad thinking! I

appreciate the material you cared to put down in CMT emails!

Regards

Sameer

[Guest guest]

If I had married early (however this was not the case) I prob would have had

kids or if I had a husband that felt strongly about it yes I would have had

kids....however my husband did not (surprised me because he is great with

kids) and we married when I was in my late 30's when my CMT was not bad and

we waited and waited, always knowing that we had time and time just slipped

away and then things got worse -- CMT progressed and he knew how tough a

pregnancy would be (I was already having probs with walking) I can't imagine

how tough it would be for me to do things with that xtra weight -- probably

real tough. I would not have the stamina to do for a child now or 10 years

prior....should of done if I was going to do in my 20's....however I was not

married then. Things never work the way you want them to.....this is just

food for thought. If you have CMT and really want children, if at all

possible, my suggestion is to have them early.

Terry Little

Littlet@...

[Guest guest]

My sons will be 30 and 33 by the end of Sept. My oldest followed in my

footsteps as a child, broken bones were a common place for me and for my son.

He now has some patches of what I am sure is psoriasis and he complains

sometimes of joint pain, I keep telling him he should be tested. He is a big

boy and must make his own choices. I also want him to get blood tests as my

biological father, aunt and grandmother (I was a foster and then adopted as a

child) all died from hemachromatoosis (overload of iron in the blood stream that

causes psorosis of the liver) He is slow to get testing for this as well.

I don't think anyone should NOT have children due to arthritis. He will deal

with this when he must. Children are a gift - they also keep us moving and

pushing sometimes to do things and I still think and believe that attitude is as

important to my daily aching life as all the meds.

Nanc

[ ] Having children

Knowing that psoriasis, and therefore psoriatic

arthritis, can be genetically passed on to any

children I might have, I have been wondering lately

if it is... I don't know, ethical, perhaps, to

reproduce. I mean, I don't have children now so it

would be different if I had already had children

prior to my diagnosis. But now that I know about the

genetic aspect, I have been wondering about this.

What do you all think? I don't know what the odds of

passing this along would be, and it's not a

life/death thing like something like Huntington's,

but it still makes me wonder.

Just curious to hear what others might think about this.

[Editor's Note: , it seems to me that one method of evaluating the

question you pose is this: Would you (would I, would others), knowing that we

would have to deal with P and PA, rather not have been born? It seems to me

that, while there are genetically passed maladies I might elect not to pass on,

P and PA are not among them; the spirit of the folks in this group is clear

evidence to me that life is worthwhile enough to put up with PA's challenges.

The question you pose is a serious one: For instance, ankylosing spondilitis,

an arthropathy itself (arthritis of the spine, which I have the dubious honor of

having in addition to PA), has a genetic marker, HLAB27, which could be tested

for in AS/PA people contemplating children. As other arthropathic markers are

identified, people will be able to know there is a real chance of bequeathing

their burden to offspring.

D.]

[Guest guest]

In a message dated 7/17/2003 5:37:37 PM Eastern Standard Time, tljohnson@...

writes:

> Knowing that psoriasis, and therefore psoriatic

> arthritis, can be genetically passed on to any

> children I might have, I have been wondering lately

> if it is... I don't know, ethical, perhaps, to

> reproduce.

Hi ,

I've got more diagnoses now than I can count, and the only other stuff in my

family is thyroid, and maybe a great grandfather who had psoriasis...so I don't

think you can be so sure you would pass it on...What I wouldn't give to have a

parent or some other relative who understood this first hand...not that I'd want

them to suffer, but it wouldn't feel like going it alone????

[Guest guest]

I say that a couple isn't ready to have a child unless they would be

totally willing and ready to adopt another's baby and bring it up as their

own. In fact, adoption would probably be a good idea to do regardless.

Otherwise, for parents with even a moderate chance of passing on the

genetic chance of developing a serious chronic disease or disability,

my opinion is that having a child is a selfish act, possibly even a sign of

Munchausen Syndrome by Proxy for diseases with a known strong genetic component

(not PA, but certainly for some types of congenital arthritis)

[Guest guest]

> Knowing that psoriasis, and therefore psoriatic

> arthritis, can be genetically passed on to any

> children I might have, I have been wondering lately

> if it is... I don't know, ethical, perhaps, to

> reproduce. ...

>

Two of the reasons I never wanted to have children was because my

father was color-blind and had epilepsy. Fortunately I didn't inherit

either condition, but epilepsy frequently skips a generation so I

think there's a good chance my kids might have one or both of those

diseases if I had chosen to have any. If I had really wanted to raise

a child, I would probably have adopted one. Personally, I've never

understood the desire to pass on one's genes, because the children

are unique and distinct individuals and in no way " immortalize " (for

lack of a better term) their parents. I've never had to worry about

the question with regard to Ps or PA, because I'd already made up my

mind.

I know there is going to be lots of disagreement on this, so please

keep in mind that I'm not trying to tell anyone what's best for them -

I'm only describing what I thought was best for me.

-- Ron

[Guest guest]

Thanks for all of the helpful thoughts and opinions about having children.

I really appreciate the responses to this somewhat heavy question.

Just to be clear, I'm still single and am not in a position to have

children right now anyway, but I have been discussing some social and

emotional issues with a social worker at the Arthritis Society and this is

one thing that I have been thinking about. Especially since I'm at an age

where I'd really like to marry and start a family.

I have always been a strong supporter of the idea of adoption, and have

thought about adopting before, even if I do have my own biological

children. So perhaps that really is the answer for me. I have no qualms

about having " someone else's " child and learning to love them, or about not

passing my genes on to another generation. The only thing I wonder is

whether the person I marry will feel the same, but I would hope so.

It's also an interesting idea to talk to a geneticist, since I really have

no idea how strong the possibility of passing PA along to my children would be.

Thanks again. More food for thought! I appreciate the discussion. :-)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit my personal web site at

http://members.shaw.ca/tljohnson/

[Guest guest]

Otherwise, for parents with even a moderate chance of passing on the

genetic chance of developing a serious chronic disease or disability,

my opinion is that having a child is a selfish act, .. <some text deleted by

moderator - Ron>

You don't know for sure that you would pass it on to your children. I could

see how it would be selfish to have a kid if you had HIV or something but

arthritis isn't ALWAYS passed on to your offspring. I think everyone deserves

the chance to have a family. My husband and I don't plan on having children for

at least another 3-5 years (we're still scared to even talk about it). We have

already discussed the fact that we will do everything in our power to have a

family. If for some reason I can't get pregnant due to my illness we will

adopt. I have no problem with giving a home to a child that needs it. However,

we will try to get pregnant on our own before going that route. My husband is

extremely healthy so maybe we'll get lucky and our kid will take after him. No

one in my family (last 3 generations) has PA or P so I have no problem with

trying to have kids.

just my opinion