#Effort2Educate Medullary Sponge Kidney - Cacchi Ricci Disease

The Issue

Medullary Sponge Kidney - Cacchi Ricci Disease has received little attention because it was considered a benign condition.  Although recent studies should change these convictions patients continue to suffer emotionally and physically due to the lack of knowledge and compassion from the medical community.  This recurrent stone disease for many is characterized by intractable excruciating pain.  Patients with Medullary Sponge Kidney often present with pain in absence of an obstruction.  The symptomatic non-obstructing stone pain can be caused from free stones not yet passed, stones attached to plaque or plugs in the kidney tubules that are massed together enough to show up on CT scan as ‘stones’ are actually tissue calcifications.  Because this stone disease lacks a physiological explanation to explain symptoms, patients with pain and non-obstructing stones are sent away to suffer, referred to pain management where stone disease is not a pain acknowledged by pain specialists or referred to a psychiatrist leaving the patient feeling that their doctors truly believe the pain is in their head.  After the kidney stones, urinary or kidney infections and hematuria are treated the chronic pain often continues leaving both the patient and specialists in a complex situation. The hope for this petition is to raise awareness about Cacchi Ricci Disease - Medullary Sponge Kidney and petition more studies to take place in an #Effort2Educate the medical community and help give patients a voice.  

5,231

The Issue

Medullary Sponge Kidney - Cacchi Ricci Disease has received little attention because it was considered a benign condition.  Although recent studies should change these convictions patients continue to suffer emotionally and physically due to the lack of knowledge and compassion from the medical community.  This recurrent stone disease for many is characterized by intractable excruciating pain.  Patients with Medullary Sponge Kidney often present with pain in absence of an obstruction.  The symptomatic non-obstructing stone pain can be caused from free stones not yet passed, stones attached to plaque or plugs in the kidney tubules that are massed together enough to show up on CT scan as ‘stones’ are actually tissue calcifications.  Because this stone disease lacks a physiological explanation to explain symptoms, patients with pain and non-obstructing stones are sent away to suffer, referred to pain management where stone disease is not a pain acknowledged by pain specialists or referred to a psychiatrist leaving the patient feeling that their doctors truly believe the pain is in their head.  After the kidney stones, urinary or kidney infections and hematuria are treated the chronic pain often continues leaving both the patient and specialists in a complex situation. The hope for this petition is to raise awareness about Cacchi Ricci Disease - Medullary Sponge Kidney and petition more studies to take place in an #Effort2Educate the medical community and help give patients a voice.  

The Decision Makers

The NIDDK Director Griffin P. Rodgers, M.D., M.A.C.P.
The NIDDK Director Griffin P. Rodgers, M.D., M.A.C.P.
David S. Goldfarb MD
David S. Goldfarb MD
Frederic Coe MD
Frederic Coe MD
Michael Borofsky MD
Michael Borofsky MD
Giovanni Gambaro MD
Giovanni Gambaro MD

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Petition created on February 19, 2019