Feedback

I’ve been so touched by the amazing responses I’ve gotten from readers, especially other Perthes survivors. This is such an isolating disease, as most people do not understand what we went through as children and what we still go through to this day. The reason I started this website was not only to share my personal story, but to create a resource for other people whose stories sound a lot like my own. So, without further ado, here are some of the incredible responses I’ve gotten from readers:


Wow, that was like reading my life story.”


I feel like you just described my life. It is a constant struggle everyday dealing with hip and back pain. The thought of living a pain free life sounds like a cruel joke and something that’s so far away from happening.”


Thank you for writing this, I always wonder if it’s just me feeling like this but it’s not. It’s a horrible thing to be in pain everyday and thinking what to do to stop more pain tomorrow. People don’t understand the struggle we have day to day living.


I feel like you read my soul…so many people judged me so negatively…I am so grateful I found a doctor who agreed my quality of life was more important and agreed to replace my hip.”


You have just described my whole life struggle… thanks for sharing… I dream about pain free days and especially nights… one day one day i will have them… till then… we have to fight...”


I’d like you to write more!! I have problems with family and friends not understanding the pain I can be in and although I don’t want their sympathy because I can’t change it yet, I would like them to understand that its not as simple as they make it seem.”


Thank you for blogging about this…I’ve lived with this in both hips since I was 3.5 and I’m 30 now… There are days I’m in so much pain I just sit down and cry.”


Thank you so much for doing this, I always feel I am on my own and nobody understands Perthes because you can’t see it. Reading this makes me happy, that others understand. Thank you.”


Wow, this is spot on! My life exactly. I can’t wait for more to come.”


Thanks for writing the words I have trouble finding to express what we go through.


“It felt as if I was reading my own story.”


“Wow! This girl nailed it. This is spot on what life is like living with Perthes.”