Justice Posted March 24, 2005 Share Posted March 24, 2005 I already googled it, but I'd like to hear from someone that's connected to it first hand. I feel like S**T Link to comment Share on other sites More sharing options...
mead107 Posted March 24, 2005 Share Posted March 24, 2005 cann't say much about it. hope everything goes ok for all of you. Link to comment Share on other sites More sharing options...
NorCal Aaron Posted March 24, 2005 Share Posted March 24, 2005 My godmother died from it in the 70's. http://www.lupus.org/education/factsheet.html Link to comment Share on other sites More sharing options...
richNjoisy Posted March 24, 2005 Share Posted March 24, 2005 you might want to check out: http://www.arthritis.org.sg/about/jlc.html Link to comment Share on other sites More sharing options...
Justice Posted March 24, 2005 Author Share Posted March 24, 2005 Thanx, I appreciate it. Link to comment Share on other sites More sharing options...
aussiew Posted March 24, 2005 Share Posted March 24, 2005 Back in the 70s, it was more serious. I know quite a few people who are living normal, active lives with it. One of my friends has had it for 25 years and with the proper med and diet, she's just fine. Link to comment Share on other sites More sharing options...
Arkady Renko Posted March 24, 2005 Share Posted March 24, 2005 I have a friend who has it and went to school with me. I can tell you how he dealt with it if you want. Send me a PM. I'll warn that he kept a lot of stuff secret from me. We have since drifted a part. Link to comment Share on other sites More sharing options...
BEAST MODE BABY! Posted March 24, 2005 Share Posted March 24, 2005 Had a friend in college. His was brought on by excessive tanning (supposedly). Also have a dear friend, and her case is more serious than his. From what I've seen, alternative medicine has some better solutions than Western Medice with good results. Then again, I live in California, and there is better access to that kind of treatment here. Link to comment Share on other sites More sharing options...
Fake-Fat Sunny Posted March 24, 2005 Share Posted March 24, 2005 It's currently seen as an autoimmune disease (the immune system of the body which fights against infections from the common cold to serious disease) goes abnormal and attacks the person's body. Unfortunately this means that despite all we know, there are tons of things we do not know. It also means that each diagnosis outcome really depends upon the individual and treatments that work for one person may do no good for someone else or vice-versa a treatment which generally has failed helps a particular person. As bad as this is, the good news is that this is not a death sentence and their are many people leading happy and productive lives after a lupus diagnosis or even after suffering disability from the disease. You sound like you are on the right track seeking others who have dealt with this disease. The experiences of others can be quite helpful in choosing your course (though as there are so many uncertainties regarding whether the case is the same as others, one person's experiences may well be quite indicative of a course for you but rarely are conclusive in telling you wxactly what should be done. Reaching out to others can also be incredibly helpful in getting the support useful for helping you, your loved ones and the 5 year old be all that you can be. In terms of personal experience, your location is a key and an internet search for local upus groups or local groups which deal with different types of auto-immune disease (MS or even AIDs) can lead you to research though they may aklso be scary or just on a different wave-length with a different disease. The best three prong approach to this an other debilitating diseases is: 1. Get the best medical care from medical professionals you can. Medical professionals like doctors do not have all the answers, but it is amazing what technology can do today. Though you might never accept their direction without question, questioning is how we learn and the medical profession is improving because people are learning that they must answer the patient and the patient's family's questions to provide good care. The doctor's oath of first do no harm is a great place for them to work from. Often nurses and the medical professionals who deal with patiens as human beings on a day to day basis provide some of the best access to understanding and using medical professional advice. 2. The baseline is key and should be an important part of any health care regime. We all should eat healthy, get plemty of rest, watch our wait, monitor stress, etc. None of us do this like we want. The key is to be as good as you can be at these things and it becomes all the more important when suffering from a debilitating disease. You definitely will do yourself no harm by eating properly, execising regularly, etc. You will almostcertainly deal better with any problems you have if you dedicate some time to the baselines. 3. Consider alternatives, There is no know cure for lupus (though there is standard care which is accepted for this and other incurable diseases. By definition, when they one day find a cure for lupus it will be an alternative or not-accepted treatment before it becomes the standard. Particularly if you feel a time crunch that you need a treatment now and none are accepted pursuing an alternative approach is going to be the correct thing to do. However, there are plenty of snake-pill salesmean out there willing to sale you a dream for your money. The unfortunate key with alternatives is: 1. First do no harm- If someone tells you the only way to make an alternative work is for you to stop doing something that has worked for you, I'd have a lot of doubts about their claims. 2. Consider waht you value- If I had a debiltating disease and someone told me I could cure it, but all I had to do was stand on my head for 20 hours a day, I'd take the disease. There will be many cures you hear about, but if they are gouing to make life not worth living for too long it is fine to pass on them. 3. Costs are important- insurance (if you have it) generally does not cover experimental approaches. However, there are many ways to try experimental approaches and bear low costs from drug studies to doctor reccomended off label uses of samples. If someone offers you a cure but it is too expensive to test it, there is nothing wrong with passing on it initially if you have to. In fact, given the seemingly increasing number of drugs pulled off the market after they were authorized by some study, there are advantages to being the second person into the pool. All in all, this sounds like a horror, but do not give up hope. People live with lupus everyday. You can also. Link to comment Share on other sites More sharing options...
BillsNYC Posted March 24, 2005 Share Posted March 24, 2005 Yes, my grandmother died of it, and my aunt currently has it. I work at HSS in NYC, we have one of the top Lupus Research Labs in the country...if you want, I can try to get some info together and send to you? Link to comment Share on other sites More sharing options...
Justice Posted March 24, 2005 Author Share Posted March 24, 2005 Yes, my grandmother died of it, and my aunt currently has it. I work at HSS in NYC, we have one of the top Lupus Research Labs in the country...if you want, I can try to get some info together and send to you? 286331[/snapback] Sure. That would be good. Thank you. Link to comment Share on other sites More sharing options...
Justice Posted March 24, 2005 Author Share Posted March 24, 2005 It's currently seen as an autoimmune disease (the immune system of the body which fights against infections from the common cold to serious disease) goes abnormal and attacks the person's body. Unfortunately this means that despite all we know, there are tons of things we do not know. It also means that each diagnosis outcome really depends upon the individual and treatments that work for one person may do no good for someone else or vice-versa a treatment which generally has failed helps a particular person. As bad as this is, the good news is that this is not a death sentence and their are many people leading happy and productive lives after a lupus diagnosis or even after suffering disability from the disease. You sound like you are on the right track seeking others who have dealt with this disease. The experiences of others can be quite helpful in choosing your course (though as there are so many uncertainties regarding whether the case is the same as others, one person's experiences may well be quite indicative of a course for you but rarely are conclusive in telling you wxactly what should be done. Reaching out to others can also be incredibly helpful in getting the support useful for helping you, your loved ones and the 5 year old be all that you can be. In terms of personal experience, your location is a key and an internet search for local upus groups or local groups which deal with different types of auto-immune disease (MS or even AIDs) can lead you to research though they may aklso be scary or just on a different wave-length with a different disease. The best three prong approach to this an other debilitating diseases is: 1. Get the best medical care from medical professionals you can. Medical professionals like doctors do not have all the answers, but it is amazing what technology can do today. Though you might never accept their direction without question, questioning is how we learn and the medical profession is improving because people are learning that they must answer the patient and the patient's family's questions to provide good care. The doctor's oath of first do no harm is a great place for them to work from. Often nurses and the medical professionals who deal with patiens as human beings on a day to day basis provide some of the best access to understanding and using medical professional advice. 2. The baseline is key and should be an important part of any health care regime. We all should eat healthy, get plemty of rest, watch our wait, monitor stress, etc. None of us do this like we want. The key is to be as good as you can be at these things and it becomes all the more important when suffering from a debilitating disease. You definitely will do yourself no harm by eating properly, execising regularly, etc. You will almostcertainly deal better with any problems you have if you dedicate some time to the baselines. 3. Consider alternatives, There is no know cure for lupus (though there is standard care which is accepted for this and other incurable diseases. By definition, when they one day find a cure for lupus it will be an alternative or not-accepted treatment before it becomes the standard. Particularly if you feel a time crunch that you need a treatment now and none are accepted pursuing an alternative approach is going to be the correct thing to do. However, there are plenty of snake-pill salesmean out there willing to sale you a dream for your money. The unfortunate key with alternatives is: 1. First do no harm- If someone tells you the only way to make an alternative work is for you to stop doing something that has worked for you, I'd have a lot of doubts about their claims. 2. Consider waht you value- If I had a debiltating disease and someone told me I could cure it, but all I had to do was stand on my head for 20 hours a day, I'd take the disease. There will be many cures you hear about, but if they are gouing to make life not worth living for too long it is fine to pass on them. 3. Costs are important- insurance (if you have it) generally does not cover experimental approaches. However, there are many ways to try experimental approaches and bear low costs from drug studies to doctor reccomended off label uses of samples. If someone offers you a cure but it is too expensive to test it, there is nothing wrong with passing on it initially if you have to. In fact, given the seemingly increasing number of drugs pulled off the market after they were authorized by some study, there are advantages to being the second person into the pool. All in all, this sounds like a horror, but do not give up hope. People live with lupus everyday. You can also. 286328[/snapback] I really appreciate this. Thank You. Link to comment Share on other sites More sharing options...
Fake-Fat Sunny Posted March 24, 2005 Share Posted March 24, 2005 I really appreciate this. Thank You. 286373[/snapback] It really is the least I can do. Good luck on the continuing journey of life for you and the 5 year old! Link to comment Share on other sites More sharing options...
Luvbills Posted March 24, 2005 Share Posted March 24, 2005 I have a good friend who has had lupus for 25 years and she is doing great@ It took awhile for her to be diagnosed but once that happened, (she took steriods for a period of time) she found some great doctors and is teaching and living everyday! Link to comment Share on other sites More sharing options...
Justice Posted March 24, 2005 Author Share Posted March 24, 2005 I have a good friend who has had lupus for 25 years and she is doing great@ It took awhile for her to be diagnosed but once that happened, (she took steriods for a period of time) she found some great doctors and is teaching and living everyday! 286507[/snapback] That's really uplifting. Let's hope my daughter is the same . Link to comment Share on other sites More sharing options...
BillnutinHouston Posted March 25, 2005 Share Posted March 25, 2005 Sorry to hear that man. I'll say a prayer for the little guy. Link to comment Share on other sites More sharing options...
Spiderweb Posted March 25, 2005 Share Posted March 25, 2005 Can't offer any info, but as a parent of a child with life threatening illness, good doctors, prayer, and lots of love can work wonders. May God watch out over your daughter and her family. Link to comment Share on other sites More sharing options...
SouthernMan Posted March 25, 2005 Share Posted March 25, 2005 I already googled it, but I'd like to hear from someone that's connected to it first hand. I feel like S**T 286074[/snapback] I'm curious - do you live in Western NY? If so, what area? My 10 year old nephew was recently diagnosed with an autoimmune disease call ALPS (Autoimmune Lymphoproliferative Syndrome). He's required to do frequent infusions to bring up his platelets and the white blood cell count. Some of the side effects have been enlarged liver, spleen, bruising, internal bleeding. His mother- my sister - has done a lot of research since the diagnosis. She found that there are unusually high incidents in certain areas around Buffalo, compared to the rest of the country, for this and similar autoimmune deficient based diseases, as well as Hodgkins Lymphoma. One of the theories has something to do with areas near certain bodies of water. They happen to live close to Tonawanda Creek. Possible connections to past chemical dumping, steel plants, Love Canal, etc. (???) Lord knows what seeped into the ground around Buffalo back in the days of the blue collar industrial boom. Just wondering if you live anywhere in the Buffalo area. Best wishes for your daughter and her good health. Link to comment Share on other sites More sharing options...
Justice Posted March 25, 2005 Author Share Posted March 25, 2005 I'm curious - do you live in Western NY? If so, what area? My 10 year old nephew was recently diagnosed with an autoimmune disease call ALPS (Autoimmune Lymphoproliferative Syndrome). He's required to do frequent infusions to bring up his platelets and the white blood cell count. Some of the side effects have been enlarged liver, spleen, bruising, internal bleeding. His mother- my sister - has done a lot of research since the diagnosis. She found that there are unusually high incidents in certain areas around Buffalo, compared to the rest of the country, for this and similar autoimmune deficient based diseases, as well as Hodgkins Lymphoma. One of the theories has something to do with areas near certain bodies of water. They happen to live close to Tonawanda Creek. Possible connections to past chemical dumping, steel plants, Love Canal, etc. (???) Lord knows what seeped into the ground around Buffalo back in the days of the blue collar industrial boom. Just wondering if you live anywhere in the Buffalo area. Best wishes for your daughter and her good health. 287135[/snapback] Sorry to hear about your nephew. No, my daughter isn't from Buffalo. I lived there the first 18 years of my life, I doubt there is a connection but you never know. Link to comment Share on other sites More sharing options...
Justice Posted March 25, 2005 Author Share Posted March 25, 2005 Can't offer any info, but as a parent of a child with life threatening illness, good doctors, prayer, and lots of love can work wonders. May God watch out over your daughter and her family. 287083[/snapback] Good luck to you and yours also. It's unfortunate, but and then again, so is life Link to comment Share on other sites More sharing options...
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