Skip to main content

The research committee officially approved a dedicated funding initiative for LPHS today. I lived through years of being ignored by doctors so knowing we finally secured this path toward real answers leaves me completely speechless. Thank you for believing that my pain was worth investigating.

May 4, 2012

Promoting Research and Encouraging Education for Chronic Loin Pain Hematuria Syndrome.

Promoting Research and Encouraging Education for Chronic Loin Pain Hematuria Syndrome.

🏆 Won — 115 supporters Verified

Final supporters

M
Michelle h.
R
Rob C.
D
Dena B.
M
meliisa m.
B
Brandi W.
S
Someone
C
Carolyn B.
J
James D.
M
Monica H.
J
Jill D.
+105 more
Started by Anonymous 15 years ago
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.

Updates

April 22, 2012

I have been reading the messages from those of you living with this constant, invisible agony every single day. My heart breaks for the years we lose to this mystery, but knowing I am not alone in this fight gives me the strength to keep pushing for answers. Please keep describing your experiences because the medical community cannot continue to ignore us if they are forced to look at our reality.

April 22, 2012

Seeing this community grow gives me hope that I will not have to live in silence with this pain forever. It is overwhelming to realize how many of us have been suffering in the dark while searching for answers that the medical world has ignored for too long.

Reached 100 supporters

April 22, 2012

9 Comments

D
David Cole
14 years ago Featured

Been to 5 different nephrologists and they all act like theyve never heard of it. ridiculous.

J
Jessica Ingram
14 years ago Featured

Living with this every single day is impossible. why is there zero funding for this?

E
Emily Murphy
14 years ago Featured

diagnosed in 2012 and still no relief. just pain meds that dont really work anyway.

S
Sarah Spencer
14 years ago Featured

15 years of absolute hell. tired of doctors telling me its all in my head.

M
Mark Whitaker
14 years ago Featured

my wife has been thru 3 surgeries and still nothing. this needs more attention from real researchers.

R
Rachel Osborne
15 years ago Featured

SO TIRED OF THE PAIN. we need answers now.

R
Rob Coplen
9 years ago

Diagnosed after 10 yrs of pain.

M
meliisa molina
11 years ago

my daughter has lphs and no doctor will help her

Share Petition

Don't stop at signing, share the petition link with friends to multiply our impact

Copy link or share directly

Instagram
QR Code