Hello, I’m hoping to connect with others with ADTKD- UMOD (previously called FJHN). Both my husband and son have this kidney disease and would be interested to connect with others who share the same condition and hear their stories.
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Hello,
In reply to your message, I’m so sorry to hear of your diagnosis and to hear that your husband and son have been diagnosed as well.
It’s hard when your family has been diagnosed as well, I do know how you feel especially when you hear that news. I know when I heard my two boys were diagnosed with polycystic kidney disease I was devastated I felt like it was all my fault…..but then I spoke to my own GP and also the specialist and they told me it is a very common but I questioned why it had not been diagnosed in my daughter and was told she could have annual tests considering the history with myself and my boys.
She’s been scanned at the age of 21 years old and she was clear but she is watched carefully.
I hope you find someone with the same as yourself my lovely.
Take care and sending love, please keep in touch.
Nicky x
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Hi
I think I can help you. 5 generations of my family have had kidney disease due to ADTKD UMOD. This includes myself and all 3 of my children. I am the patient representative for the RaDaR group for this condition so make sure your family have been recruited to RaDaR by their local team. On the page you should find the report of the patient event held in Newcastle a year or so ago.
I’m happy for you to contact me directly, so please feel free to send me a direct message on this forum.
Angela
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That’s amazing, thanks Angela.
I’ll be sure to do that.
Kelly