Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Wow-- Straight from sarcoidoisis 101. IE. It happens mostly to blacks. Or Scandinavians. Or women. It generally hits the lungs-- and you won't know it. (Forget that you've had ongoing upper respiratory infections-- it's only sarc.) A simple course of steroids will put it into remission. (Forget that NEW research shows that those of us treated with pred end up with a more chronic progressive course of sarc.) Oh, and for those of us that aren't in the 2 ethnic groups listed above-- we're hypochondriacs, menopausal, depressed and since we are supposedly of a higher education-- we find more reasons to think our sarc is of the progressive chronic type, and we seek out more info-- and have access to computers, and since this will hit the papers, our docs are worried sick that all their sarc patients will call in with more symptoms, convinced we're sicker than we are. Back to the hypochondriacism. INSERT LOUD SCREAM! None of us is thinking this disease into progression. None of us are so stupid as to think that we just "feel" awful. None of us is so stupid that we choose to go into a fight for disability because we don't "want" to work anymore. (Forget that SSDI is going to be 25% of what you made when you could work-- and your mortgage has doubled....) Statistics are outdated, now that sarc is being diagnosed more often even caucausians get it-- almost as often as blacks. Ignorance may be bliss-- but for us-- it's life threatening. It may even be a life sentence. Any 6 year old kid could have googled the info in the Bernie Mac article-- and then go to the link that says sarcoidosis has a cure. What a dis-service to all of us that don't have the remitting, you never knew you had, progressive disease that has blessed you with joint and muscle pain, ligament pain, idiopathic pulmonary fibrosis, heart palpitations, infertility issues, thyroid problems, skin rashes and fatigue that would bring an elephant to it's knees (oh, that's me on steroids), and damn those md's that continue to poo-poo this disease. Shame on them.... Sincerely, Tracie NS Moderator/co-owner a better news article than most ILLNESS Bernie Mac's death draws attention to mysterious sarcoidosis Tuesday, August 12, 2008 Harlan Spector Plain Dealer Reporter The death of actor and comedian Bernie Mac on Saturday put a spotlight on a mysterious inflammatory disease that Mac reportedly battled for years, and which strikes black Americans particularly hard. Sarcoidosis is a chronic disease that can attack any organ, but most often shows up as clusters of inflammatory cells in the lungs. It may produce no symptoms, or cause asthmalike shortness of breath and chest pain. Mac died at age 50 of pneumonia at a Chicago hospital. His publicist said the pneumonia was unrelated to Mac's sarcoidosis, which went into remission in 2005, the Associated Press reported. But doctors speculated sarcoidosis might have played a role because it would be unusual for pneumonia alone to kill a 50-year-old. Doctors don't know what triggers sarcoidosis or why blacks -- especially black women -- and Scandinavians have the highest rates. Though the disease is rarely fatal, black Americans die 16 times more often than whites do from it, according to the American Lung Association. The Cuyahoga County coroner ruled in May that black R & B singer Levert, 39, died of complications of sarcoidosis while in jail for failing to pay child support. Dr. Edgar , a chief adviser at University Hospitals Case Medical Center who has devoted a long career to minority health issues, said sarcoidosis is often suspected when adults develop breathing difficulty for the first time. The lung ailment typically strikes between ages 20 and 40. "It can manifest itself on any part of the body," said. "It can present as a skin issue. It can present as a heart issue. Usually, it shows up as a lung issue." Steroids and immune-suppressing drugs are used to treat the disease, but there is no cure. In some cases, the inflammation and the sandlike cell formations - called granulomas - recede naturally. UH lung specialist Dr. Finigan said many patients with the disease don't have symptoms at all. "You can have sarcoidosis and not even know it," he said. Doctors at the Cleveland Clinic, which began a sarcoidosis center of excellence a few years ago, are studying risk factors that may explain why some patients become extremely ill and others suffer no ill effects, said Dr. Jeff Chapman. "It's highly variable," Chapman said. "Most people with a diagnosis of sarcoidosis do well and a few do not." To reach this Plain Dealer reporter: hspector (AT) plaind (DOT) com, 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 No comment except WELL SAID and I AGREE WITH YOU COMPLETELY! Hugs, Darlene NS Co-Owner/Moderator Re: SArc 101 Wow-- Straight from sarcoidoisis 101. IE. It happens mostly to blacks. Or Scandinavians. Or women. It generally hits the lungs-- and you won't know it. (Forget that you've had ongoing upper respiratory infections-- it's only sarc.) A simple course of steroids will put it into remission. (Forget that NEW research shows that those of us treated with pred end up with a more chronic progressive course of sarc.) Oh, and for those of us that aren't in the 2 ethnic groups listed above-- we're hypochondriacs, menopausal, depressed and since we are supposedly of a higher education-- we find more reasons to think our sarc is of the progressive chronic type, and we seek out more info-- and have access to computers, and since this will hit the papers, our docs are worried sick that all their sarc patients will call in with more symptoms, convinced we're sicker than we are. Back to the hypochondriacism. INSERT LOUD SCREAM! None of us is thinking this disease into progression. None of us are so stupid as to think that we just "feel" awful. None of us is so stupid that we choose to go into a fight for disability because we don't "want" to work anymore. (Forget that SSDI is going to be 25% of what you made when you could work-- and your mortgage has doubled....) Statistics are outdated, now that sarc is being diagnosed more often even caucausians get it-- almost as often as blacks. Ignorance may be bliss-- but for us-- it's life threatening. It may even be a life sentence. Any 6 year old kid could have googled the info in the Bernie Mac article-- and then go to the link that says sarcoidosis has a cure. What a dis-service to all of us that don't have the remitting, you never knew you had, progressive disease that has blessed you with joint and muscle pain, ligament pain, idiopathic pulmonary fibrosis, heart palpitations, infertility issues, thyroid problems, skin rashes and fatigue that would bring an elephant to it's knees (oh, that's me on steroids), and damn those md's that continue to poo-poo this disease. Shame on them.... Sincerely, Tracie NS Moderator/co-owner .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Darlene, what can I say except that they loaded me up on steroids this week after they misdiagnosed my pericardial heart pain as fibromyalgia, and it progressed to a riproaring upper respiratory infection just short of pneumonia. I'm on a roll-- and it's steaming!! Hugs back, T Re: SArc 101 Wow-- Straight from sarcoidoisis 101. IE. It happens mostly to blacks. Or Scandinavians. Or women. It generally hits the lungs-- and you won't know it. (Forget that you've had ongoing upper respiratory infections-- it's only sarc.) A simple course of steroids will put it into remission. (Forget that NEW research shows that those of us treated with pred end up with a more chronic progressive course of sarc.) Oh, and for those of us that aren't in the 2 ethnic groups listed above-- we're hypochondriacs, menopausal, depressed and since we are supposedly of a higher education-- we find more reasons to think our sarc is of the progressive chronic type, and we seek out more info-- and have access to computers, and since this will hit the papers, our docs are worried sick that all their sarc patients will call in with more symptoms, convinced we're sicker than we are. Back to the hypochondriacism. INSERT LOUD SCREAM! None of us is thinking this disease into progression. None of us are so stupid as to think that we just "feel" awful. None of us is so stupid that we choose to go into a fight for disability because we don't "want" to work anymore. (Forget that SSDI is going to be 25% of what you made when you could work-- and your mortgage has doubled....) Statistics are outdated, now that sarc is being diagnosed more often even caucausians get it-- almost as often as blacks. Ignorance may be bliss-- but for us-- it's life threatening. It may even be a life sentence. Any 6 year old kid could have googled the info in the Bernie Mac article-- and then go to the link that says sarcoidosis has a cure. What a dis-service to all of us that don't have the remitting, you never knew you had, progressive disease that has blessed you with joint and muscle pain, ligament pain, idiopathic pulmonary fibrosis, heart palpitations, infertility issues, thyroid problems, skin rashes and fatigue that would bring an elephant to it's knees (oh, that's me on steroids), and damn those md's that continue to poo-poo this disease. Shame on them.... Sincerely, Tracie NS Moderator/co- owner .. Quote Link to comment Share on other sites More sharing options...
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