Daughter with nail patella syndrome needs a kidney

[Shainakatiesmom]

Hi, does anyone have experience with kidney failure from nail patella syndrome. she was originally diagnosed with primary FSGS but is now most likely secondary to Nail Patella syndrome. Looking for Living donor 0 blood type. She is only 33 years old.

[Kbristow]

Hi, I'm not familiar with nail patella syndrome but you can find strategies for finding a living donor at kidney.org/transplantation/.... What was especially helpful for me before I found a donor seven years ago was having a smalll team of 2-3 people to be my "kidney team". They made themselves available to answer some basic questions about being a living donor. This made it comfortable for potential donors to talk to someone anonymously if they wanted to learn more before seriously considering donation. ... Sharing your story through social media or making up flyers or creating a web page re also ways to get your daughter's need out there. Include information that a living donor might ask. There are plenty of resources at the website listed above. Best wishes to you and your daughter. It is a tough place to be but there's a lot of support out there. Your daughter can also connect with a kidney patient who's been in her shoes and ask about their experience; More info at kidney.org/patients/peers. and of course this online community is a great place to share your thoughts and questions. So many of us have been there and are happy to answer questions and share our tough journey too.

[Shainakatiesmom in reply to Kbristow]

Thank you so very much! This is very helpful!