from Lauren (email@example.com)
Overwhelmed at 17.
I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work….
from Melissa (firstname.lastname@example.org)
I just got diagnosed with this year. Ive had problems for over 10 years during which time I was seeing a urologist. He referred me to the nephrologist who gave me this diagnosis. He didnt offer up any hope just pain meds.
from Sherry R-V
Answers to my questions…do you have any?
I was diagnosed almost 2 months ago. I’m 58, but now have realized that I have had this disease for many many years. I can’t count how many doctors have told me “there’s nothing I can do for you.” Or MY ABSOLUTE FAVORITE “Maybe you should seek some phychiatric help.” Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.
Overwhelmed and in need of advice
Hi, my name is Kat. I’m 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes — and seemingly every other test known to medical science showed nothing more telling than “hey, there’s lots of blood and stuff in your urine.”…
from kiki (email@example.com)
23 years old and uncurable
…please watch out for sick people who pretend to be in pain but there are only giving false hope ! please i dont want anyone to be given hope when its not there!…