DivaSkyChick 0 #1 July 30, 2003 I am working with a very prominent and cool skydiving filmmaker on a charity benefit to raise money and awareness for Lupus. He's going to do a skydiving film festival in Los Angeles in October and we'd like to speak to skydivers with Lupus for an introduction video. So, if you have the desease and are willing to talk about it publicly, shoot me a pm or post here so I can follow up. Thanks so much! Mandy --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites
dropdeded 0 #2 July 30, 2003 Please send me any details about this, my wife has Lupus and Im interested in whatever your friend is trying to do. No, she's not a skydiver, hell, I barely qualify myself (I did buy her a Tandem for Christmas but due to her health, a no go), but there are so many unknowns with Lupus and I'd appreciate any additional info. Thanks dropdeded------------------------------------------ The Dude Abides. - Quote Share this post Link to post Share on other sites
VanillaSkyGirl 6 #3 July 30, 2003 Ed, now I understand about your wife. I do not have Lupus, but I do have 2 other immunde illnesses that I have had for 13 years now. It makes life difficult. I will PM you tomorrow. I don't feel like talking about it today. Diva~ That sounds like a great benefit. Quote Share this post Link to post Share on other sites Billy 0 #4 July 30, 2003 Mandy Sweety You Rock!! Good luck with your benefit!! Missed you guy's at LP! Hugs & Kisses B Natural Born FlyerZ.com Quote Share this post Link to post Share on other sites BBKid 0 #5 July 30, 2003 Anyone want to tell me what Lupus is? It might be called something different over here. I've grown up around doctors, nurses, and hospitals, and I've never heard of it. Nick --------------------------- "I've pierced my foot on a spike!!!" Quote Share this post Link to post Share on other sites Marz 0 #6 July 30, 2003 I found a good link: http://my.webmd.com/content/healthwise/47/11750 Lupus (Systemic Lupus Erythematosus) Topic Overview What is systemic lupus erythematosus? Systemic lupus erythematosus, or SLE, is an autoimmune disease that can cause inflammation, pain, and tissue damage throughout the body. Although some people with SLE have mild symptoms, it is a chronic disease and can become severe. For most people, ongoing monitoring and treatment can control symptoms and prevent serious organ damage. Only in rare cases does SLE become life-threatening.1 There are five types of lupus erythematosus: systemic, discoid/cutaneous, subacute cutaneous, drug-induced systemic, and neonatal. Systemic (SLE) is the most serious type. There is no known cure for this disease. What are SLE symptoms like? Systemic lupus erythematosus can take a long time to diagnose, because symptoms vary widely, and they come and go. Periods of time when symptoms worsen are called relapses or flares. Periods of time when symptoms improve are called remissions. SLE symptoms rarely disappear completely. The first signs of SLE are usually skin rash (especially with sun exposure), joint pain, and fatigue. Mouth sores, hair loss, or fevers may also be present. Over time, many people with SLE develop neurological symptoms, most commonly migraine headaches. SLE can also affect the kidneys, heart, lungs, or blood cells. What causes SLE? SLE has no single known cause. Experts believe that a combination of factors come together to trigger the autoimmune process. These factors can include genetic predisposition, certain infections and medications, and exposure to environmental elements such as ultraviolet B light, as in sunlight. SLE is most common in women who are in their high-estrogen stages of life, as during the childbearing years.2 While estrogen is thought to strengthen immune system function, it can in turn worsen an autoimmune disease. Estrogen and similar hormones have been linked to SLE, though their role is poorly understood. How is SLE diagnosed? There is no single definitive test for SLE. A diagnosis of lupus is made based on a combination of signs, symptoms, and blood tests. It is easiest to diagnose SLE if you have typical symptoms and your blood tests positive for antinuclear antibodies, or ANA. A positive ANA suggests possible autoimmune disease, but by itself does not confirm a diagnosis of lupus. If your medical history and physical examination don't make a strong case for a particular diagnosis, your health professional can test your blood for other signs of SLE and other similar conditions. How is SLE treated? There is no known cure for SLE. You can control mild to moderate SLE symptoms with proper self-care, such as appropriate rest, exercise, and avoidance of sun exposure. Nonsteroidal anti-inflammatory drugs (NSAID) or antimalarial medication—such as hydroxychloroquine (Plaquenil)—can also help manage symptoms. If you have severe disease, especially if it involves vital organs, your doctor may recommend corticosteroids or other medications, such as azathioprine (Imuran), mycophenolate mofetil (CellCept), methotrexate, or cyclophosphamide (Cytoxan). These medications suppress the immune system and are referred to as immunosuppressives; the latter two are sometimes referred to as cytotoxic medications. Marz _________________________________________ Did I just kill another thread? Quote Share this post Link to post Share on other sites DivaSkyChick 0 #7 July 30, 2003 Well wow. Way to do your homework! A few more facts: Lupus affects 1 out of 185 Americans and strikes adult women 10-15 times more frequently than adulte men. Lupus is more prevalent than AIDS, sickle-cell, cerebral palsy, MS and cystic fibrosis, COMBINED. Yet so few people know what Lupus is! And now about Lupus LA: Lupus LA is the three year old, long hoped for fundraising support group of renowned physician/ author Daniel Wallace MD, one the world's leading authorities on Lupus. The mission of Lupus LA is to shed light and understanding on this often misdiagnosed disease that affects nearly two million nationwide, and to raise funds for the Lupus Research Institute. LRI is dedicated to finding fresh scientific approaches and new ideas to treat and cure Lupus. --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites westcoastchica 0 #8 July 30, 2003 hey mandykins... you know we'll all be waiting for further info about this event as details develop. keep us posted. smooches to you and leyla Quote Share this post Link to post Share on other sites BBKid 0 #9 July 30, 2003 Ah, SLE - I have heard of it after all. I'd be interested to know what happens for this project - keep us informed, if you're at liberty to do so. Nick --------------------------- "I've pierced my foot on a spike!!!" Quote Share this post Link to post Share on other sites vskydiver 0 #10 July 31, 2003 Mandy, I have Lupus. (SLE) I've been skydiving for the last 20 years. If you are still looking for skydivers with Lupus feel free to email me with any questions you have! V Quote Share this post Link to post Share on other sites MattyBoy 0 #11 July 31, 2003 I do have Lupus...although it tends to only manifest itself every few years and the symptoms don't last too long as long as I get the right medication. I only started skydiving this year at it hasn't presented any problems whatsoever, although I always make the DZ aware that I'm on continuous medication before I jump. As far as I know, its a really diverse disease which affects people in a wide variety of ways, so my experience may or may not be of any help to you, but please feel free to PM or email me if I can help any more. Good luck! I may be gullible but at least I have a magic fish Quote Share this post Link to post Share on other sites DivaSkyChick 0 #12 August 1, 2003 Thanks everybody and please continue to post and pm me if you're just seeing this for the first time. I will be speaking to Andrew this weekend and we'll sort out what we're doing. And we'll keep you guys updated with regard to the film festival as well. My heartfelt thanks to all of you. --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites skyangel 0 #13 August 4, 2003 Hi Mandy, Anything I can do to help out ... let me know. Lupus is very closely related to scleroderma ... and you know I have been battling that for quite some time now. I am there for you chicky! Sorry we missed Christiaans bd party ... so much craziness in my world right now. Lis Quote Share this post Link to post Share on other sites DivaSkyChick 0 #14 August 4, 2003 Thanks sweetie! I'll let you know more as we know more. I have you guys in my thoughts daily. Love you both. Mandy --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites dropdeded 0 #15 September 13, 2003 Any updates??? dropdeded------------------------------------------ The Dude Abides. - Quote Share this post Link to post Share on other sites DivaSkyChick 0 #16 September 15, 2003 Greetings all, I do not have an update as of yet. The venue that Andrew wanted was unavailable so I believe the event is being pushed back some. Anybody who wants more information should get in touch with Andrew Staich - [email protected]. I'll simply be helping with promoting the event once it's set. Thanks again to all who replied. I hope to have something to report here soon! --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites Join the conversation You can post now and register later. If you have an account, sign in now to post with your account. Note: Your post will require moderator approval before it will be visible. 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Billy 0 #4 July 30, 2003 Mandy Sweety You Rock!! Good luck with your benefit!! Missed you guy's at LP! Hugs & Kisses B Natural Born FlyerZ.com Quote Share this post Link to post Share on other sites
BBKid 0 #5 July 30, 2003 Anyone want to tell me what Lupus is? It might be called something different over here. I've grown up around doctors, nurses, and hospitals, and I've never heard of it. Nick --------------------------- "I've pierced my foot on a spike!!!" Quote Share this post Link to post Share on other sites
Marz 0 #6 July 30, 2003 I found a good link: http://my.webmd.com/content/healthwise/47/11750 Lupus (Systemic Lupus Erythematosus) Topic Overview What is systemic lupus erythematosus? Systemic lupus erythematosus, or SLE, is an autoimmune disease that can cause inflammation, pain, and tissue damage throughout the body. Although some people with SLE have mild symptoms, it is a chronic disease and can become severe. For most people, ongoing monitoring and treatment can control symptoms and prevent serious organ damage. Only in rare cases does SLE become life-threatening.1 There are five types of lupus erythematosus: systemic, discoid/cutaneous, subacute cutaneous, drug-induced systemic, and neonatal. Systemic (SLE) is the most serious type. There is no known cure for this disease. What are SLE symptoms like? Systemic lupus erythematosus can take a long time to diagnose, because symptoms vary widely, and they come and go. Periods of time when symptoms worsen are called relapses or flares. Periods of time when symptoms improve are called remissions. SLE symptoms rarely disappear completely. The first signs of SLE are usually skin rash (especially with sun exposure), joint pain, and fatigue. Mouth sores, hair loss, or fevers may also be present. Over time, many people with SLE develop neurological symptoms, most commonly migraine headaches. SLE can also affect the kidneys, heart, lungs, or blood cells. What causes SLE? SLE has no single known cause. Experts believe that a combination of factors come together to trigger the autoimmune process. These factors can include genetic predisposition, certain infections and medications, and exposure to environmental elements such as ultraviolet B light, as in sunlight. SLE is most common in women who are in their high-estrogen stages of life, as during the childbearing years.2 While estrogen is thought to strengthen immune system function, it can in turn worsen an autoimmune disease. Estrogen and similar hormones have been linked to SLE, though their role is poorly understood. How is SLE diagnosed? There is no single definitive test for SLE. A diagnosis of lupus is made based on a combination of signs, symptoms, and blood tests. It is easiest to diagnose SLE if you have typical symptoms and your blood tests positive for antinuclear antibodies, or ANA. A positive ANA suggests possible autoimmune disease, but by itself does not confirm a diagnosis of lupus. If your medical history and physical examination don't make a strong case for a particular diagnosis, your health professional can test your blood for other signs of SLE and other similar conditions. How is SLE treated? There is no known cure for SLE. You can control mild to moderate SLE symptoms with proper self-care, such as appropriate rest, exercise, and avoidance of sun exposure. Nonsteroidal anti-inflammatory drugs (NSAID) or antimalarial medication—such as hydroxychloroquine (Plaquenil)—can also help manage symptoms. If you have severe disease, especially if it involves vital organs, your doctor may recommend corticosteroids or other medications, such as azathioprine (Imuran), mycophenolate mofetil (CellCept), methotrexate, or cyclophosphamide (Cytoxan). These medications suppress the immune system and are referred to as immunosuppressives; the latter two are sometimes referred to as cytotoxic medications. Marz _________________________________________ Did I just kill another thread? Quote Share this post Link to post Share on other sites
DivaSkyChick 0 #7 July 30, 2003 Well wow. Way to do your homework! A few more facts: Lupus affects 1 out of 185 Americans and strikes adult women 10-15 times more frequently than adulte men. Lupus is more prevalent than AIDS, sickle-cell, cerebral palsy, MS and cystic fibrosis, COMBINED. Yet so few people know what Lupus is! And now about Lupus LA: Lupus LA is the three year old, long hoped for fundraising support group of renowned physician/ author Daniel Wallace MD, one the world's leading authorities on Lupus. The mission of Lupus LA is to shed light and understanding on this often misdiagnosed disease that affects nearly two million nationwide, and to raise funds for the Lupus Research Institute. LRI is dedicated to finding fresh scientific approaches and new ideas to treat and cure Lupus. --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites
westcoastchica 0 #8 July 30, 2003 hey mandykins... you know we'll all be waiting for further info about this event as details develop. keep us posted. smooches to you and leyla Quote Share this post Link to post Share on other sites
BBKid 0 #9 July 30, 2003 Ah, SLE - I have heard of it after all. I'd be interested to know what happens for this project - keep us informed, if you're at liberty to do so. Nick --------------------------- "I've pierced my foot on a spike!!!" Quote Share this post Link to post Share on other sites
vskydiver 0 #10 July 31, 2003 Mandy, I have Lupus. (SLE) I've been skydiving for the last 20 years. If you are still looking for skydivers with Lupus feel free to email me with any questions you have! V Quote Share this post Link to post Share on other sites
MattyBoy 0 #11 July 31, 2003 I do have Lupus...although it tends to only manifest itself every few years and the symptoms don't last too long as long as I get the right medication. I only started skydiving this year at it hasn't presented any problems whatsoever, although I always make the DZ aware that I'm on continuous medication before I jump. As far as I know, its a really diverse disease which affects people in a wide variety of ways, so my experience may or may not be of any help to you, but please feel free to PM or email me if I can help any more. Good luck! I may be gullible but at least I have a magic fish Quote Share this post Link to post Share on other sites
DivaSkyChick 0 #12 August 1, 2003 Thanks everybody and please continue to post and pm me if you're just seeing this for the first time. I will be speaking to Andrew this weekend and we'll sort out what we're doing. And we'll keep you guys updated with regard to the film festival as well. My heartfelt thanks to all of you. --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites
skyangel 0 #13 August 4, 2003 Hi Mandy, Anything I can do to help out ... let me know. Lupus is very closely related to scleroderma ... and you know I have been battling that for quite some time now. I am there for you chicky! Sorry we missed Christiaans bd party ... so much craziness in my world right now. Lis Quote Share this post Link to post Share on other sites
DivaSkyChick 0 #14 August 4, 2003 Thanks sweetie! I'll let you know more as we know more. I have you guys in my thoughts daily. Love you both. Mandy --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites
dropdeded 0 #15 September 13, 2003 Any updates??? dropdeded------------------------------------------ The Dude Abides. - Quote Share this post Link to post Share on other sites
DivaSkyChick 0 #16 September 15, 2003 Greetings all, I do not have an update as of yet. The venue that Andrew wanted was unavailable so I believe the event is being pushed back some. Anybody who wants more information should get in touch with Andrew Staich - [email protected]. I'll simply be helping with promoting the event once it's set. Thanks again to all who replied. I hope to have something to report here soon! --- www.facebook.com/mandyhamptonfitch Quote Share this post Link to post Share on other sites
