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

Nobody should suffer like my friend has. She had to move across the country to get treatment and it's behind!

For my daughter, Shannon and all those who suffer.

MSK patient

I am proud to sign this petition. My nephew has suffered with this debilitating disease for years. I pray that some relief and a cure comes within his lifetime . I pray this for him and all of the children that grow into adults battling this disease

Struggling with MSK.

For Mrs. Muncy. She has this disease.

I was recently diagnosed and hoping for a future with help and answers because of people spreading the word. Thank you!

I was diagnosed with MSK about 5 years ago. Prior to that, I suffered with kidney stones, kidney infections and flank pain almost daily! They made my diagnosis through ultrasound and later found it was both kidneys through a KUB. I've had lithotripsies, which were unsuccessful, I've been hospitalized for stuck stones for days at a time. The fatigue is the worst of all, feeling exhausted no matter the hours of sleep you get the night before. I have hundreds of stones between the two kidneys and have only passed 17. More often I pass little pieces of my kidney that resemble tissue or skin. I had a great doctor that was more than willing to learn all about this disease and lost him due to insurance reasons. It's so hard to find a good doctor who even cares to look into MSK. We definitely need awareness and research done now!

I have MSK and it is very painful and does affect the quality of life.

Thank you. Msk patient 54 and living in pain daily.

I have MSK and agree more research and better patient care is desperately needed.

We need to fight for us and msk patients. We need to be heard and cared about!

I suffer from MSK it's unbearable at times, yet people say omg I had a single kidney stone and it was agony, worse than child birth!! Imagine that pain x 100s!! I mask my pain most of the time because people get sick of hearing it, but inside I'm crying I can be hurting that much, or exhausted from my kidneys not filtering like a normal persons, we need our kidneys, and unfortunately I have MSK in both of mine, I get very scared sometimes because sepsis can happen so quickly to us, please help us ❤️

As a suffer of MSK I know something needs to be done

I also have this abnormality.

I suffer from MSK, please help us all by researching and addressing the disease in the medical community!

Please help the people that suffer from this horrible Disease... Thinking of you Linda Fenn xxx

I am so glad that this has come to all our attention, I thank you Linda Fenn, for enlightening me on the subject of MSK in the first place.So far none of my family has been affected so much, altho my son at one stage his kydneys were at 30%. so any knowledge I can gain will be well absorbed, pardon the pun everyone.

Please do something right for these people

i am a suporter of a msk patient i think the docs hav got it wrong if they think msk isnt painful EVERYDAY my friend suffers even wen stones not on move she is in pain all the time it just the depth that varys