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Hi I'm Kipy ! |
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I live in South Carolina. I have a chronic disease called: SARCOIDOSIS, I was diagnosed when I was 35 in 1992. I felt tired and ached all over and was short of breath. I had never heard of Sarcoidosis. I was scared and I felt so alone. But, since I have been on the internet I have found so many friends that have the same disease. It is so good to find others who really understand what I'm going through. This is a disease of the auto-immune system. It causes our immune system to attack our own body. It makes me feel achy all over. My joints muscles and nerves all over my body are affected. It is in my lungs and I get short of breath. I also skin lesions and a rash on my face. It is in all of the glands in my neck. The Salivary gland and the parotid glands are all diseased. It is also in the soft tissues of my gums and my sinuses. I almost lost my sight in my left eye in 1995. when the disease got into the membrain that surrounds the eye. It can also attack vital organs inside the body as well. It can cause lesions on the liver, spleen, lungs, and heart that will cause them to become rigid and hard which causes them not to function properly. There is no known cure and no one knows what causes it. In some people it has just gone away as mysteriously as it came on. But, with a lot of people it doesn't go away and it becomes chronic. It takes away our lively hood, our hopes and dreams and our once active lives. People who do not have this disease don't understand how we feel. We may look alright on the outside but, we are not well on the inside. On the inside of our bodies there is a war going on. The diease is in our blood and it goes anywhere in the body and makes us very sick.There is not much we can do about it. It can be very frustrating at times and depressing. Many of us end up on DIsability despite our fight to keep going. I hope to be able to help others with this disease and to also help bring awareness of this debilitating disease to those who don't understand it and how it affects us. I have some great links here that have been helpful to me. I hope that you will stay awhile and check them out. Thank you for stopping in at Kipy's Place. I hope you will come back again. You are always welcome.
Luv and Hugz to all of my Sarc Buds Kipy PS. If you have a friend or a loved one with this disease, please offer them the love and understanding that they need so badly. |
What Is Sarcoidosis? | |
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Years ago back in 1998 when I first got online, the first thing I wanted to do was to talk to others who had this disease and were going through the same thing that I was going through. God then gave a vision. If I felt alone with this disease, there must be others out there who feel the same way. Then, I met someone else with sarcoidosis. Her name was Penny . Since I was new on the internet , she helped me to set up the first place for others to meet and we named it SarcoidBuddies. We started it at Talkcity and over the years we had to move to MSN. Now we have moved to blastgroups.com We have a great group of people there from all over the world. We would love to have you join our group. Friends and Family Members of those with this disease are welcomed too! Just click on the link below and it will take you to the main page. Then, click on "Join" . I look forward to seeing you there! | |
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If YOU have Sarcoidosis you NEED to click on the link below and register at the Sarcoidosis Registery. The more of us who register the more attention we will get from Doctors and Researchers to find a CURE. | |
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Sarcoidosis HELP Sites | ||||
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