Medullary Sponge Kidney (MSK) Patients Unite - One Voice, Several Goals

Diagnosed with MSK 3 years ago and it has been pure hell since then. Most doctors aren't educated well enough to understand and sympathize with us. The chronic pain is excruciating and brings fear, anger, and depression. I urge friends and family members of an MSK sufferer to sign this petition! God bless!

Please help us with MSK.

I suffer with MSK and it is so hard to find a doctor that will really listen to you. My last urologist got sick of me always bothering him so he did a ureteroscopy and removed all (and I mean ALL) the stones he could, I believe he even removed imbedded ones which they are not supposed to do. He removed in the upper 40's left kidney & lower 50's right kidney. Since then my chronic pain level has been a million times worse.

My niece has suffered half half her life with this condition .hoping for more help and understanding.

I am the mother of a daughter (LeeAnn Hounsell) who's suffers severely with MSK. I am hoping for more understanding from Doctors and others.

Please help me and other MSK sufferers get the research and help we solely deserve! From a 37yr old RN who has been battling this for almost 18years of my life!

My daughter has MSK and I watch her suffer, it is horrible!! Anyone that can help this petition go thru please do, trust me if you had to watch your child in pain every day you would sign!!

I also suffer from chronic pain.

I have MSK and can't find a doctor that knows what to do with me. Please help.

I've been dealing with chronic pain for years. I pass stones yearly, monthly, weekly... more information has to be given. More research needs to be done!! I'm tired of being tired! Tired of just dealing with the pain in silence...

I pray that you get all the help you need, this doesn't sound good either.

Diagnosed with MSK IN DEC 2015. Problems with stones for 18 years. Suffer with chronic pain daily. Please help people like myself!

Dx 2001

I was diagnosed with MSK 15 years ago. I've had numerous surgeries and now I'm on heavy pain medication for chronic pain caused by this rare disease.

Have suffered with MSK since was 18, now 50 , have suffered pain daily

I have had MSK now for 7 years!! So wish they had more info on our disease

Living with MSK

My wife has msk and I watch her in pain and deal with this. I feel hopeless and she does too. She tries to drink plenty of water and eat healthy and follow dr advice but it's not enough. We are moving to china to see if Eastern medicine will make a difference.

People should not have to live with the pain this causes. More research and medical support and understanding needed

My mum suffers from this disease and it has kept her from living a normal life. Doctors need better training on msk!