Loin pain hematuria syndrome (LPHS)
Loin pain hematuria syndrome, also LPHS – is a very rare condition which predominately affects females. Described as combination of unilateral or bilateral flank pain and microscopic or macroscopic amounts of blood in the urine that is otherwise unexplained.
One theory proposes that it is caused by a thin glomerular basement membrane and red blood cell (RBC) renal tubular congestion that leads to swelling of the kidney and distension of the renal fascia resulting in pain.
Stories
Kat – Overwhelmed and in need of advice
Lauren Runkle – Overwhelmed at 17.
dragonfly1693 -Living with LPHS
Tania – I am 16 yrs old and my doctors believe I have LHPS
Kiki – 23 years old and uncurable
Shery – Answers to my questions…do you have any?
More about LPHS
http://en.wikipedia.org/wiki/Loin_pain_hematuria_syndrome
To talk to people with lphs.
I have lphs. I am trying to get a list of contact info and see if I can get a research study. Patti. 619 992 2765
I would like to organize cases of lphs and find a researcher to analyze all the data…if u can help me leave your name and callback number @619 992 2765 thank you and I pray for rest for all of you
you will find us all on face group, we have several support groups etc for people with LPHS. i am in the process of doing a website for people with LPHS to link everyone and everything together so people get the help and support they need. it will also include a list of treatments and meds that work for different people – will keep you posted once its up and running, carol x
13 year old son with loin pain
My son had loin pain and went undiagnosed for seven months. He has basially thin membrane syndrome with pain that is rare. He went from an athlete to someone who couldn’t even play tag. A conference of nphrologists diagnosed him an prescribed a low dose high blood pressure medicine. It reduced the pressure in the kidney enough to releive the pain. Montifiore Childrens Bronx, NY
Just got intro face book hope to chat to people who suffer from LPHS I’M in South Africa
It took almost 16years and many surgeries that wasn’t needed to finally be told I have LPHS, but I have large amounts of blood in my urine and the pain controls my life. I only have one kidney, and see a Pain Dr. and am on large amounts of morphin and methadome
Hi all got linked up with others having LPHS . only problem is dont have internet have to go to internet cafe to keep in touch. you all in my prayers never far from my thoughts.Love from Cape Town South Africa
Hi all . I to am keeping up the fight to inform and have decided to create an organisation here in south africa that would educate and help raise funds for our plight. At present my first battle is to raise funds for my own operation to have the morphine pump replaced. this is a costly excercise but i believe God will help me while i try to help other . the pump works fantastic i can atleast move around on good days. together with Tai Chi that by boyfriend has introduced me to , it really works try it