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PKD Charity for Autosomal Dominant PKD

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New person alert!

Pinkskies123 profile image
3 Replies

Hello. I’m new here. Just thought I would introduce myself. I have a daughter who has suspected PKD.

You can read all about it in my profile. Just wondering if anyone else is on the same medication and if so has anyone else had a black out from taking the medication?

Look forward to chatting with you all.

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Pinkskies123 profile image
Pinkskies123
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3 Replies
Susan_101 profile image
Susan_101ModeratorPKD Charity for Autosomal

Hello Pinkskies123. You will find UK based Facebook groups useful places. They are moderated by PKD Charity pkdcharity.org.uk/support/f... The PKD Charity is also hosting an ADPKD in Children and Young People information event later in Spring 2022. Please do sign up to hear about its latest events bit.ly/FBGKeepinTouch

Pinkskies123 profile image
Pinkskies123 in reply to Susan_101

Thank you! That’s very useful.

Beachgirl32 profile image
Beachgirl32

I’m sorry your daughter is going through this. I never took that meds but took some that made my blood pressure go to low and that when I had fainting problems . I found out I had polycystic kidney disease I. My 30 s but my is inherited type. I’m 65 now not on dialysis yet but headed that way One thing I wish I did earlier was drink more water . Water is very important to drink . Stay as active as possible I would tell your daughter .

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