Giving birth

[sourav...@gmail.com]

Hello everyone,

Although I tried to search for a discussion on this topic but could not find any and thought of posting it myself.

I am a PKD patient with normal kidney functions. It may sound a bit weird but recently when I had been to a nephrologist and when he asked me if I have any kids, I told him I dont plan to have any as I might pass this condition to them and I dont want them to go through these challenges. On this, he very briefly suggested me to explore on gene testing. My limited understanding tells me that gene testing is for finding out the nature of gene and gene therapy maybe is to prevent the cysts to further grow.

I wanted to check (and I know it is weird to ask this) if there is a way to prevent the transmission of affected gene to the kids while giving birth?

Thanks,

Sourav

[Diane Smith]

I have had gene testing I am PKD 1 allele, the more aggressive form. I have never had children. As far as I know any PKD patient should not have children. My sister aunts & uncles, mother & father all had children and the PKD worsened. 

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 3:21 AM, sourav...@gmail.com <sourav...@gmail.com> wrote:

Hello everyone,

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[Diane Smith]

There is something called “PKD births”

http://www.pkdiet.com/pkdBirth.php

 Some are trying this on our website. It is before you get pregnant. Ask your doctor about this 

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 9:13 AM, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

I have had gene testing I am PKD 1 allele, the more aggressive form. I have never had children. As far as I know any PKD patient should not have children. My sister aunts & uncles, mother & father all had children and the PKD worsened. 

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/DE448A8E-84E9-4DE4-A6D1-6E9ED9EFEFAA%40mac.com.

[Diane Smith]

My female relatives all went to dialysis at the third birth. Their kidney functioning had decreased dangerously low by then.

To prevent your own cysts from further growing drink lots of water. As far as I know, this doesn’t help the baby    

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 9:13 AM, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

I have had gene testing I am PKD 1 allele, the more aggressive form. I have never had children. As far as I know any PKD patient should not have children. My sister aunts & uncles, mother & father all had children and the PKD worsened. 

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/DE448A8E-84E9-4DE4-A6D1-6E9ED9EFEFAA%40mac.com.

[j bayne]

Do you use telegram, twitter........?

To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/71F146AD-807B-4978-B9F5-9E53D08E046F%40mac.com.

[sourav...@gmail.com]

@ Diane.....did you mean that PKD worsens on having children or that the children who have PKD1 gene parents have more severe PKD?

[sourav...@gmail.com]

@ Diane.....If I am not wrong, the suggestion of eating folate for reducing the risk of passing the gene (mentioned in PKD Birth link) is in the context of a female having PKD only and not if the male partner is only having PKD. Am I right?

[sourav...@gmail.com]

If you are asking me, yes I do use telegram / twitter. 

[Diane Smith]

Yes, jbayne

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 11:17 PM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mYr4uxOPw%2BYVKXW6RHTvZLu%3DAo1pfaD-cS%3DUSw1VjNa5A%40mail.gmail.com.

[Diane Smith]

 I do not use twitter, or telegram ,jbayne 

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 11:17 PM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mYr4uxOPw%2BYVKXW6RHTvZLu%3DAo1pfaD-cS%3DUSw1VjNa5A%40mail.gmail.com.

[Diane Smith]

No souvre

I mean the female with PKD gets worse not the children.

There were twins with PKD born once. The one twin had it ok. The second twin had it really bad and died of PKD complications.

Sent from my awesome Blue iPhone 13

~Diane

On Mar 17, 2022, at 11:17 PM, j bayne <jba...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/CACVc-mYr4uxOPw%2BYVKXW6RHTvZLu%3DAo1pfaD-cS%3DUSw1VjNa5A%40mail.gmail.com.

[Kunal Mankodiya]

Sourav, 

In my case, I found out about PKD after I had two children. Glad that you are already thinking about alternatives. 

I am not very much familiar with Gene Testing. However,  I found a good resource on Genetic Counselling for patients with PKD:

https://pkdcharity.org.uk/adpkd/what-is-adpkd/genetic-counselling-and-testing

Hope this helps - good luck, 

-Kunal (Male, 40y, Living with PKD)