Comments on: Loin pain hematuria syndrome (LPHS)

By: kariemah marais

kariemah marais — Tue, 03 Apr 2012 12:31:28 +0000

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

By: kariemah marais

kariemah marais — Tue, 03 Apr 2012 12:18:29 +0000

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

By: Merosticka

Merosticka — Mon, 12 Mar 2012 19:09:39 +0000

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

By: kariemah

kariemah — Mon, 21 Nov 2011 06:58:25 +0000

Just got intro face book hope to chat to people who suffer from LPHS I’M in South Africa

By: Mary Bunce

Mary Bunce — Fri, 07 Oct 2011 00:31:03 +0000

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

By: Mary Bunce

Mary Bunce — Mon, 11 Apr 2011 02:36:15 +0000

13 year old son with loin pain

By: carol crombie

carol crombie — Mon, 07 Feb 2011 07:55:32 +0000

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

By: Patti

Patti — Sun, 19 Dec 2010 07:56:19 +0000

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

By: Patti

Patti — Sun, 19 Dec 2010 06:53:38 +0000

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

By: Jennifer

Jennifer — Wed, 15 Dec 2010 20:55:13 +0000

To talk to people with lphs.