Loin pain-hematuria syndrome (LPHS) is characterized by repeated episodes of severe flank pain associated with hematuria without the evidence of major causes for flank pain. LPHS tends to be more common in women and young individuals. Though the disease is associated with IgA nephropathy and nephrolithiasis in some instances, workup remains negative in the majority of cases. The cause for this condition remains a mystery and no cure is available.
More must be done to understand the pathology of this condition and steps need to be taken to eradicate the pain without the use of long term pain medication. The medical community as a whole is virtually unaware of LPHS and its chronically painful effects, leaving many patients suffering without proper treatment. Often, because of the lack of knowledge and rarity of the condition, patients wait years for a diagnosis only to learn that not only is there no cure but that the answers they so desperately seek do not exist. There is only speculation as to what is happening inside the kidneys and what is causing the debilitating pain.
The treatment options at the present are not promising, so much so that most nephrologists no longer recommend any of them aside from pain management. Pain management, in most cases, consists of long term opiate use such as morphine and dilaudid, which have repercussions of their own.
First and for most, the nephrologists of the world need to work together and find importance in researching answers to this chronically painful ailment. If we can learn the origin or cause of LPHS maybe we can eventually learn how to fix it. Patients and their doctors need to work closely together and commit to making advancements towards a successful cure.
It is important that LPHS is taught in medical schools all over the world. Nurses, GP’s, E.R. staff, should all be aware of LPHS and the physical, mental and emotional strain chronic pain has on the human body. Patients need be treated with compassion and proper care must be received as quickly as possible.
Please join me in my plea to the Nephrology community by signing your name to this petition. Please show your support for patients, like myself, who suffer from LPHS.
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