Loin Pain Hematuria Syndrome (LPHS) is an extremely rare disease that has surfaced recently. Here are some facts about LPHS:
LPHS was first identified in England in 1967 among women who were taking birth control pills.
Approximately 90% of the reported cases of LPHS are female.
LPHS was first noted in men in the 1980's.
LPHS was first noted in the USA in the 1980's.
The first renal autotransplatation for LPHS was done in 1982.
Cases of LPHS have been reported from England, Canada, USA, India, Australia, Ireland, Scotland and Germany.
The age range for LPHS is from 6 to 50 years.
There are approximately 200 cases of LPHS in the world; no doubt, there are more undocumentated cases.
Pain attacks due to LPHS can occur several times per week, every few weeks, or every few months. These pain attacks can last from hours to weeks.
Here are some guidelines to help you decide if you think you need to investigate this problem with your doctor.
The condition is mainly characterized by intractable pain involving the kidney and abdominal areas.
Microscopic blood or blatantly obvious amounts of it can be seen in the urine. Clot retention can also occur.
It is extremely important that physicians recognize the need for adequate pain medication for this disorder.
Forcing fluids by mouth or I.V. are very helpful in decreasing the hematuria and in reducing the risk of clot retention.
Be prepared to see several doctors and yield to psychiatric exams before you get a correct diagnosis. This is common with any disease that is not common, such as diabetes. LPHS has only been diagnosed in a few hundred people around the entire world, so this is one disease that is not likely to pop into a physician's head.
In an effort to try to collect some basic statistics about the occurance of LPHS, Winoka Plummer is starting a basic database of sufferers. If you have LPHS, please send some email or snail mail to her (see the main page for addresses). Include your name, your location, how long you have had the disease, where you got diagnosed, who diagnosed you, and a way for her to get in touch with you (i.e. phone number, address, email). This information WILL NOT be distributed to anyone without your permission.
