This is me, this is what I do and why I do it …
My name is Carol and I have had for over 12 years now a condition called Loin Pain Hematuria Syndrome (LPHS). When I was first diagnosed with the condition I was basically told how rare it was and that there was nothing they could do for me except manage/treat 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. 12 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 my support group where they can relate to others and what they are going through and experiencing. My main goal is to provide a one stop shop that links everything and everyone together, to 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. Ive gone from being so active with things like being a lifegaurd, proffessional swimmer, gymnast, Scottish life saving champ, top skin care therapist … the list goes on. Now im pretty much housebound and in sevre pain 24/7 affecting my ability to do the most simple things. Im not the type of person that can do nothing, i need to have something in life to keep me going. Hence the reason i set up this website and my own support group. My next task in hand is setting up a charity but its not an easy thing to do, especially when your this ill! Please bare with me, if you wish to be added to the support group please leave me a message.
Due to alot of spam filtering through the site, all legitiment comments now have to be approved before posting - im sorry for any time delays this may cause.
WE HAVE NOW OPENED AN LPHS AWARENESS SHOP IN WHICH YOU CAN BUY CUSTOM MADE JUMPERS AND TOPS – please check it out and show your support -
WE ARE TRYING TO RAISE AS MUCH AWARENESS AS WE CAN ABOUT OUR CONDITION TO HELP PEOPLE WORLDWIDE. I CANT DO THIS ON MY OWN, PLEASE JUST SHARE THE LINK TO THE WEBSITE OR LIKE THE FACEBOOK PAGE. DOING SOMETHING SO LITTLE WILL HELP US ALOT MORE THAN YOU REALISE AND WE CANT THANK YOU ENOUGH. WE HAVE TO GET THIS CONDITION OUT TO EVERYONE FROM FRIENDS AND FAMILY TO DOCTORS AND NURSES TO MAKE THEM UNDERSTAND WHAT LIVING WITH LPHS IS REALLY LIKE!
TO HELP RAISE LPHS AWARENESS WORLDWIDE PLEASE SHARE THIS
- THIS IS MY VIDEO STORY –
LIVING WITH LPHS FOR 11/12 YEARS – PLEASE WATCH, LIKE AND SHARE TO SHOW YOUR SUPPORT XX