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

Definitely needs to get out their . As a lot suffer from this cruel disease.

My friend's daughter suffers from this and I know how she suffers from it.0

My good friend has struggled with kidney pain and numerous stones for years. This isn't a benign disease - it affects her life, and her family every day.

Asking for more research and understanding for this terrible disease.

I suffer from the pain of MSK every day and have had difficult finding dr's to treat me properly. I now travel 3 1/2 hours to see a urologist and nephrologist who recognize me pain.

Please help those who are in constant pain!

I suffer bilaterally with this terrible painful disease. My daughter also suffers just as bad and it's very difficult to get the treatment we need when Dr.'s are to stubborn to learn more to help us.

I am a fellow MSKer who suffers from this debilitating disease. I have so many stones in both kidneys that they can't count. I will tell you that I've had 2 children and I'd rather have more without medications than to keep passing these stones even with medications. This is such a debilitating disease that robs you and your family of any quality of life. The pain from this disease is unbearable.

My wife has this disease. I would so take this from her if I could in a heart beat!

I suffer with MSK and it has gotten worse the older I get.I have back to back urinary infections with multiple bacteria. I have blood in my urine pass small stones on a daily basis and I have chronic pain as well as nausea and fatigue. Please help us!!!

I have MSK!!! Horribly painful and a horrific disease to live with

For you Ali

I have a friend that suffers greatly from this

I too have MSK and appreciate you taking the time to try to raise awareness to this debilitating disease!!! The daily CHRONIC pain is no joke and literally ruins your life! My amazingly supportive boyfriend asks me every morning if today is a bad day or a good day and when I respond "well, I'm hurting pretty bad" he says is it your normal pain or are you having a flare up? MOST of us MSKers do not have this type of support and suffer in silence! I know I did for 16 years and I'm only 28!!! We need to make this disease more known so more people have support.

Good Luck Linda Fenn, every signature helps xxx

My grand daughter suffers daily with pain of MSK.

I suffer with this same disease. We need help!

Please help everyone have the life they want and need.

I don't have MSK, but some of my friends do. I do, however, have another rare kidney disease, which has some overlap. Any research done for MSK could have significant impacts on my kidney disease.

I have msk n have been in chronic pain now for 6 years n have had over 44 surgeries due to mostly msk. Ive lost my career as a midwifery assistant and niw live off disability msk had drastically changed my life im only 32 n im a mother of 2 young boys. Please help to change how were treated fir this incurable disease.