My name is Carol and I have had for over 11 years now a condition called Loin Pain Hematuria Syndrome (LPHS). When I was first diagnosed with the condition I was basically told that there was nothing they could do for me except manage the pain. as very little was known about the condition if I wanted to learn more on it I was told to google to find the answers to my questions etc. At that time there was very little information, help or treatments available and what information I could find, I found it hard to read and understand as it was very technical. 11 years later and the condition is no longer as rare yet it is still a daunting task reading through and understanding all the information and articles available online.
My purpose in setting up this web site is to help anyone that has been diagnosed have all the information they need at their finger tips in a way that is easy and simple to understand. I want to be able to help people in a way that was not available to me when I first learnt of the condition. I want them to hear about the condition from people, first hand, who are living with it on a daily basis. anyone suffering from this condition can feel very isolated so my web site can link them to others that can relate to what they are going through and experiencing. My main goal is to link everything/everyone together and guide anyone with this condition in the right direction to get all the help and support they need.
This web site contains the basic information you need to know about the condition, links to various articles/research on the condition, personal stories from people who live with the condition, links to various facebook groups which provide vital support to anyone with this condition, information on different treatments and medications that have been tried and tested by people from our facebook groups.
I hope this web site will inspire you to get the help and treatment you need and deserve, no one should have to live life in this much pain. I want people to learn from my mistakes so that no-one ends up in the situation I am in now.
Please bare with me as the website will be work in progress in which I will try to keep it as up to date as possible with all the information I have. If you want to contribute and think of anything that you would like added to the web site to help others, please feel free to contact me through this or through facebook. I have started a page that will help bring everyone together, see link below for this.
WE ARE TRYING TO RAISE AS MUCH AWARENESS AS WE CAN ABOUT OUR CONDITION – MY PART IN RAISING AWARENESS IS THROUGH THE LPHS WEBSITE, FACEBOOK PAGE AND NOW THE FACEBOOK SUPPORT GROUP – LIVING WITH LPHS.
TO HELP RAISE AWARENESS ON LPHS PLEASE SHARE THE WEB ADDRESS LINKS AND PAGES WITH DOCTORS, FAMILY AND FRIENDS TO HELP THEM UNDERSTAND WHAT IT IS FOR US AND HOW IT AFFECTS US. ALSO VISIT THE FACEBOOK PAGE TO MEET OTHERS GOING THROUGH THE SAME THING AS YOU.
THE MORE PEOPLE THAT LEARN ABOUT THE CONDITION WILL HOPEFULLY BENEFIT US IN THE LONG RUN SO PLEASE SHARE THE WEB LINK -
http://livingwithlphscouk.fatcow.com/
http://livingwithlphs.co.uk/
THE LIVING WITH LPHS SUPPORT PAGE -
Living with LPHS
Promote Your Page Too
LIVING WITH LPHS SUPPORT GROUP -
http://www.facebook.com/carol.crombie?sk=friends&v=friends#!/groups/210465602362768/
TO JOIN THIS GROUP YOU JUST HAVE TO CLICK THE LINK AND SEND ME A FRIENDS REQUEST OR MESSAGE ASKING FOR AN INVITE TO THE GROUP, FROM THERE I CAN ADD YOU. THIS IS A PRIVATE GROUP SO EVERYTHING SAID AND DONE HERE IS PRIVATE AND STAYS HERE.
THE SUPPORT PAGE IS TO RAISE AWARENESS AND THE GROUP IS THERE FOR SUPPORT. EVERYONE WELCOME X