Sarcoidosis Awareness
Target:
sarcoidosis
Sponsored by:
For over 100 years, Sarcoidosis has refused to give up its secrets. No cause has been found. No cure has been researched. We are the victims of a great and terrible mystery that includes as to how many actually have it, how many have actually died from it, how many are now suffering from it. Sarcoid is just as bad as cancer. It can cause pain and suffering and it is deadly.
Please help us get the attention of the medical field and those who have sarcoidosis that need help. This is for USA ONLY.
Come join our group at http://www.sarcoidnosis.ning.com
and this group http://www.inspire.com/groups/stop-sarcoidosis/
Help us promote our cause by wearing a funny T-Shirt at:
http://www.cafepress.com/teegee
Please help us get the attention of the medical field and those who have sarcoidosis that need help. This is for USA ONLY.
Come join our group at http://www.sarcoidnosis.ning.com
and this group http://www.inspire.com/groups/stop-sarcoidosis/
Help us promote our cause by wearing a funny T-Shirt at:
http://www.cafepress.com/teegee
For over 100 years, Sarcoidosis has refused to give up its secrets. No cause has been found. No cure has been researched. We are the victims of a great and terrible mystery that includes as to how many actually have it, how many have actually died from it, how many are now suffering from it. Sarcoid is just as bad as cancer. It can cause pain and suffering and it is deadly.
Please help us get the attention of the medical field and those who have sarcoidosis that need help. This is for USA ONLY.
Come join our group at http://www.sarcoidnosis.ning.com
and this group http://www.inspire.com/groups/stop-sarcoidosis/
Help us promote our cause by wearing a funny T-Shirt at:
http://www.cafepress.com/teegee
Please help us get the attention of the medical field and those who have sarcoidosis that need help. This is for USA ONLY.
Come join our group at http://www.sarcoidnosis.ning.com
and this group http://www.inspire.com/groups/stop-sarcoidosis/
Help us promote our cause by wearing a funny T-Shirt at:
http://www.cafepress.com/teegee
On behalf of our community and the millions of Americans and peoples worldwide who suffer silently, we respectfully request a small slice of mercy.
Through no fault of our own, we are the victims of an insidious disorder called Sarcoidosis. We are your fathers, mothers, brothers, sisters, sons, & daughters and we live everyday among you in uncertainty and pain. This disorder steals our life's breath away; turns our lungs to stone; robs our muscles and joints of vitality; paralyzes our bodies; makes us blind; and stops our hearts without warning.
But the true hallmark of our disorder is that we endure without complaint, because in a world of war, famine, cancer, and other horrors, our troubles are said to be trivial. But we suffer, nonetheless. We are all around you. Someone you know has Sarcoidosis.
For over 100 years, Sarcoidosis has refused to give up its secrets. No cause has been found. No cure has been researched. We are the victims of a great and terrible mystery.
The small slice of mercy that we request is that you, with your influence and stern resolve, please divert a little more of this great nation's copious resources to our plight. And, more importantly, use your influence in the avenues of power to draw attention to the misery of Sarcoidosis. Perhaps with your clarion call, the medical powers that be will take notice, and take action.
There is no living with Sarcoidosis. But we do. And we suffer. Silently.
Respectfully,
The Sarcoidosis community
Resources:
http://www.stopsarcoidosis.org
http://www.sarcoidosis.ning.com
Through no fault of our own, we are the victims of an insidious disorder called Sarcoidosis. We are your fathers, mothers, brothers, sisters, sons, & daughters and we live everyday among you in uncertainty and pain. This disorder steals our life's breath away; turns our lungs to stone; robs our muscles and joints of vitality; paralyzes our bodies; makes us blind; and stops our hearts without warning.
But the true hallmark of our disorder is that we endure without complaint, because in a world of war, famine, cancer, and other horrors, our troubles are said to be trivial. But we suffer, nonetheless. We are all around you. Someone you know has Sarcoidosis.
For over 100 years, Sarcoidosis has refused to give up its secrets. No cause has been found. No cure has been researched. We are the victims of a great and terrible mystery.
The small slice of mercy that we request is that you, with your influence and stern resolve, please divert a little more of this great nation's copious resources to our plight. And, more importantly, use your influence in the avenues of power to draw attention to the misery of Sarcoidosis. Perhaps with your clarion call, the medical powers that be will take notice, and take action.
There is no living with Sarcoidosis. But we do. And we suffer. Silently.
Respectfully,
The Sarcoidosis community
Resources:
http://www.stopsarcoidosis.org
http://www.sarcoidosis.ning.com
We signed the "Sarcoidosis Awareness" petition!
# 1,421:
3:03 am PST, Dec 1,
Ray Whitaker, Oklahoma
I have sarcoid and it has been slowly killing me for about ten years now.I have had double bilateral bacterial phumonea several times.they first put on zithromax aka zpac for follow up when I got out of the hospital.then they tried prednisone.but that hurt the calcium in my body to bad.so they stuck me on advair.albuterol.zoponex.pulmicourt.these are all taken thru a neb.if anyone knows of a way to get rid of the nodules and bumps on the skin I feel like a freak no one has helped me yet.I would love to swim in a pool withouT my shirt on and without running out of breath please help
I have sarcoid and it has been slowly killing me for about ten years now.I have had double bilateral bacterial phumonea several times.they first put on zithromax aka zpac for follow up when I got out of the hospital.then they tried prednisone.but that hurt the calcium in my body to bad.so they stuck me on advair.albuterol.zoponex.pulmicourt.these are all taken thru a neb.if anyone knows of a way to get rid of the nodules and bumps on the skin I feel like a freak no one has helped me yet.I would love to swim in a pool withouT my shirt on and without running out of breath please help
Yes I have sarcoid I was diagnosed at sparks reg med in fort smith arkansas and I still don't any more than I did then plz help
# 1,420:
6:52 pm PST, Nov 27,
Anne Druck, New Jersey
A dear friend suffers from this disorder
A dear friend suffers from this disorder
# 1,419:
2:59 pm PST, Nov 24,
Andrea Timmons, Arizona
# 1,418:
11:03 am PST, Nov 24,
K. Jaz Winchester Owens, California
I was diagnosed with Sarcoidosis back in May 2006. I developed a chronic cough, had a chest x-ray & CT Scan which led to a mediastinoscopy with a biopsy which confirmed my condition. My symptoms include chronic coughing, shortness of breath, chronic fatigue & joint pain in my hands and wrists. The doctors have been trying to put me on plaquenil & steroids which I refuse to take due to the side effects and toxicity of these drugs respectively. I'm very concerned about the lack of attention and effective research for this disease and as a suffer I urge that more be done about this. This disease is killing too many people knowingly and silently due to the lack of medical knowledge and understanding! We need the government to stand up and pay attention to this and recognize this as a REAL disease so that people who suffer from it and can't work can be provided for! I stand united with other sufferers across the nation and across this world in the fight to raise more awareness and to advocate for more intense research of this dibilitating disease!
I was diagnosed with Sarcoidosis back in May 2006. I developed a chronic cough, had a chest x-ray & CT Scan which led to a mediastinoscopy with a biopsy which confirmed my condition. My symptoms include chronic coughing, shortness of breath, chronic fatigue & joint pain in my hands and wrists. The doctors have been trying to put me on plaquenil & steroids which I refuse to take due to the side effects and toxicity of these drugs respectively. I'm very concerned about the lack of attention and effective research for this disease and as a suffer I urge that more be done about this. This disease is killing too many people knowingly and silently due to the lack of medical knowledge and understanding! We need the government to stand up and pay attention to this and recognize this as a REAL disease so that people who suffer from it and can't work can be provided for! I stand united with other sufferers across the nation and across this world in the fight to raise more awareness and to advocate for more intense research of this dibilitating disease!
I am personally a sufferer of Sarcoidosis.
# 1,417:
3:02 pm PST, Nov 17,
Ronda Tyree, Ohio
# 1,416:
1:47 pm PST, Nov 17,
Nadia Davidovich, Argentina
PLEASE HELP!!
PLEASE HELP!!
# 1,415:
7:11 pm PST, Nov 13,
Alisis Richardson, New York
# 1,414:
6:07 am PST, Nov 10,
Darlene Forlizzi, New York
# 1,413:
10:05 am PST, Nov 9,
Tiffany Hernandez, Massachusetts
I was diagnosed with Sarcoidosis in 2004. When I became pregnant with my son in February 2003 I noticed my eye swelling to the point that I could no longer see out of it. After I delivered in late 2003, I immediatley saw an eye Dr. who biopsied the mass in my right lacrimal gland, and after 6 months of blood work and testing for other diseases such as Lymes Disease, Crohn's Disease, and Lupus, I am now being told that I "may" have Sarcoidosis because the blood work has not completely confirmed nor denied it. Since then, I have been taking very strong medicines used to treat cancer; Methotrexate weekly, and Humira injections biweekly. I was even told that I should do radiation to my lungs for the white nodules and to my right eye to shrink the mass. It's very frustrating knowing that there is such an illness affecting so many people with little known information for cures. I'm being treated at Boston Medical Center because after visiting different hospitals in the surrounding areas and after the MD's couldn't diagnose me, I was turned away. My life has been turned upside down since being "diagnosed". My hopes for having more children have been put on hold due to the medication. But I'm alive and thankful for each day I wake up. Thank you. Tiffany Hernandez, Age 32.
I was diagnosed with Sarcoidosis in 2004. When I became pregnant with my son in February 2003 I noticed my eye swelling to the point that I could no longer see out of it. After I delivered in late 2003, I immediatley saw an eye Dr. who biopsied the mass in my right lacrimal gland, and after 6 months of blood work and testing for other diseases such as Lymes Disease, Crohn's Disease, and Lupus, I am now being told that I "may" have Sarcoidosis because the blood work has not completely confirmed nor denied it. Since then, I have been taking very strong medicines used to treat cancer; Methotrexate weekly, and Humira injections biweekly. I was even told that I should do radiation to my lungs for the white nodules and to my right eye to shrink the mass. It's very frustrating knowing that there is such an illness affecting so many people with little known information for cures. I'm being treated at Boston Medical Center because after visiting different hospitals in the surrounding areas and after the MD's couldn't diagnose me, I was turned away. My life has been turned upside down since being "diagnosed". My hopes for having more children have been put on hold due to the medication. But I'm alive and thankful for each day I wake up. Thank you. Tiffany Hernandez, Age 32.
# 1,412:
3:39 pm PST, Nov 7,
Lisa Cresnar, New York
# 1,411:
8:23 am PST, Nov 7,
ANGELA FORLIZZI, Pennsylvania
# 1,409:
5:52 am PST, Nov 3,
Valerie Bitz, Illinois
# 1,408:
4:55 am PST, Nov 3,
Name not displayed, Wisconsin
# 1,407:
9:14 pm PST, Nov 2,
Kelly McGee-Allen, Illinois
My husband was just diagnosed with Sarcoidosis, after having to undergo an EKG, EEG, Gated Myoview, chest xray, lung CT, Lung Lymph Node Biopsy, plus four rounds of blood tests before he was diagnosed with Sarcoidosis. A week ago, I knew nothing of, or about, this disease, now I know more than I could ever had wanted to. Please help find a cure for this disease before it costs more unneeded medical tests and needless worry about having cancer!
My husband was just diagnosed with Sarcoidosis, after having to undergo an EKG, EEG, Gated Myoview, chest xray, lung CT, Lung Lymph Node Biopsy, plus four rounds of blood tests before he was diagnosed with Sarcoidosis. A week ago, I knew nothing of, or about, this disease, now I know more than I could ever had wanted to. Please help find a cure for this disease before it costs more unneeded medical tests and needless worry about having cancer!
My husband has sarcoidosis of the lungs.
# 1,406:
10:30 am PST, Nov 2,
Peter Johnson, Arizona
# 1,405:
9:14 am PST, Nov 2,
Amy K Graves, California
I was diagnosed with sarcoidosis stsge 1-2of the lungs in May of 2009 after being ill for three years. I was given numerous amounts of antibiotics and steroids for "pneumonia and bronchitis" almost every month without any concern as to why I would be sick so often. It was like I was sent away because "it was all in my head." I have not since 2006 got back to normal. I cannot go to places that expose me to elements that send me into tizzies, like motorsports events, cant breathe when its cold, cant hardly use my air conditioners when its hot, be out in the wind, leave my windows open in my house at night because it sets me off. I never know how i am going to sleep because I don't know if i will be able to breathe. I cripple up for no reason. I tire easily. I am now having trouble with blurry vision. This is very frightening to us that have it and to our families. Please do not forget about us, we need to find a cure.
I was diagnosed with sarcoidosis stsge 1-2of the lungs in May of 2009 after being ill for three years. I was given numerous amounts of antibiotics and steroids for "pneumonia and bronchitis" almost every month without any concern as to why I would be sick so often. It was like I was sent away because "it was all in my head." I have not since 2006 got back to normal. I cannot go to places that expose me to elements that send me into tizzies, like motorsports events, cant breathe when its cold, cant hardly use my air conditioners when its hot, be out in the wind, leave my windows open in my house at night because it sets me off. I never know how i am going to sleep because I don't know if i will be able to breathe. I cripple up for no reason. I tire easily. I am now having trouble with blurry vision. This is very frightening to us that have it and to our families. Please do not forget about us, we need to find a cure.
I have sarcoidosis.
# 1,404:
9:39 pm PST, Nov 1,
Donald Graves, California
My wife was diagnosed with Sarcoidosis earlier this year after having dealt with "something" for the past 3 years which the doctor's had no CLUE what it was or how to treat it (other than more and more steroids - their "miracle cure" it seems) I'm hoping that more can be done to determine treatments or at LEAST find some answers for this horribly debilitating condition, before it is too late for some people.
My wife was diagnosed with Sarcoidosis earlier this year after having dealt with "something" for the past 3 years which the doctor's had no CLUE what it was or how to treat it (other than more and more steroids - their "miracle cure" it seems) I'm hoping that more can be done to determine treatments or at LEAST find some answers for this horribly debilitating condition, before it is too late for some people.
# 1,403:
3:52 pm PDT, Oct 30,
Name not displayed, Massachusetts
Lifelong remitting relapsing systemic sarcoidosis finally diagnosed in 2007 after major exacerbation. If anywhere within traveling distance, recommend Sarcoidosis Clinic at Boston Medical Center, just exceptional. Honestly wish this was cancer instead - better understanding, clearer prognosis, more appropriate pain control, billions for research - and cancer gets treated.
Lifelong remitting relapsing systemic sarcoidosis finally diagnosed in 2007 after major exacerbation. If anywhere within traveling distance, recommend Sarcoidosis Clinic at Boston Medical Center, just exceptional. Honestly wish this was cancer instead - better understanding, clearer prognosis, more appropriate pain control, billions for research - and cancer gets treated.
# 1,402:
11:33 pm PDT, Oct 29,
Lisa Smith, Michigan
I was diagnosed with Sarcoidosis of the Lungs, Aug, 2008. Pulmonary Dr. at the time didn't know much about it. Just pretty much didn't treat me. Now I have no insurance and am experiencing severe lung and neck pain. I have a Gen. Practioner and am going to see him tomorrow. I have been scared of telling him of all my symptoms due to being made to feel like this is nothing. I cough day and night, get dizzy from lack of oxygen, my joings ache. I am very scared that I won't be cared for due do lack of insurance. I feel I need to be in the hospital right now. I know my lungs have had the same infection for months. Twice on pregnisone in the last few months, clears me up for a week and then back to lung infection. Fatigue is rediculous. My boyfriend is most likely going to leave me due to the fact I am currently unemployed and he doesn't ever talk about this disease. He thinks it is nothing. PLEASE GET THE AWARENESS OF THIS AWFUL DISEASE OUT THERE. WE ARE NOT FAKING, OUR SYMPTOMS ARE REAL.
I was diagnosed with Sarcoidosis of the Lungs, Aug, 2008. Pulmonary Dr. at the time didn't know much about it. Just pretty much didn't treat me. Now I have no insurance and am experiencing severe lung and neck pain. I have a Gen. Practioner and am going to see him tomorrow. I have been scared of telling him of all my symptoms due to being made to feel like this is nothing. I cough day and night, get dizzy from lack of oxygen, my joings ache. I am very scared that I won't be cared for due do lack of insurance. I feel I need to be in the hospital right now. I know my lungs have had the same infection for months. Twice on pregnisone in the last few months, clears me up for a week and then back to lung infection. Fatigue is rediculous. My boyfriend is most likely going to leave me due to the fact I am currently unemployed and he doesn't ever talk about this disease. He thinks it is nothing. PLEASE GET THE AWARENESS OF THIS AWFUL DISEASE OUT THERE. WE ARE NOT FAKING, OUR SYMPTOMS ARE REAL.
DIAGNOSED AUGUST, 2008
# 1,400:
10:44 am PDT, Oct 26,
LaTonya Evans, North Carolina
My mother died two weeks ago as a result of sarcoidosis and pulmonary hypertension. She was only 57 years old. We must continue to promote the awareness in hopes that one day a cure will be found.
My mother died two weeks ago as a result of sarcoidosis and pulmonary hypertension. She was only 57 years old. We must continue to promote the awareness in hopes that one day a cure will be found.
# 1,399:
7:31 am PDT, Oct 26,
Pat Eley-Pollard, Pennsylvania
I was diagnosed 1995 with sarc of the liver & joints. I had a wonderful support group in New Orleans but because of Katrina had to move to Philadelphia. If anyone is aware of a group here please inform me
I was diagnosed 1995 with sarc of the liver & joints. I had a wonderful support group in New Orleans but because of Katrina had to move to Philadelphia. If anyone is aware of a group here please inform me
# 1,398:
5:01 pm PDT, Oct 15,
Leslie Villante, Pennsylvania
I was diagnosed with Sarcoidosis a year ago. It affects my lungs, lymph nodes and joints. I've been on prednisone for one flare up and thank god I haven't had any since. I believe I'm in remission but still get reminded every 6 months for chest scans and breathing tests.
I was diagnosed with Sarcoidosis a year ago. It affects my lungs, lymph nodes and joints. I've been on prednisone for one flare up and thank god I haven't had any since. I believe I'm in remission but still get reminded every 6 months for chest scans and breathing tests.
I would be more then willing to do a walk in Philadelphia or suburb area.
# 1,397:
3:23 pm PDT, Oct 14,
Name not displayed, Florida
# 1,396:
1:42 pm PDT, Oct 14,
Brian Ryan, Florida
# 1,395:
2:28 pm PDT, Oct 8,
Scott Hillier, United Kingdom
Mum had it for 8 years before passing away in May this year.
Mum had it for 8 years before passing away in May this year.
# 1,394:
1:23 pm PDT, Oct 6,
Keith Wheeler, Virginia
My Mother i only 48 years old and this disease is eating away at her lungs. What makes it worse is that I have to sit here and watch a once healthy, strong, loving grandmother and mother slowly wither away because there seems to be "no cure". It is time the world learns more about this disease.
My Mother i only 48 years old and this disease is eating away at her lungs. What makes it worse is that I have to sit here and watch a once healthy, strong, loving grandmother and mother slowly wither away because there seems to be "no cure". It is time the world learns more about this disease.
# 1,393:
1:14 pm PDT, Oct 5,
KATHY RODGERS, Texas
i have had it since 2006 ,dermatology discover what it was, it affect my legs,my arms and my lung. i am being treated by a lung specilist i take medicine twice a day. i have been treated very well.
i have had it since 2006 ,dermatology discover what it was, it affect my legs,my arms and my lung. i am being treated by a lung specilist i take medicine twice a day. i have been treated very well.
# 1,392:
10:16 pm PDT, Oct 4,
Christina Welch, Florida
I didnt go looking for this disease. I am not an alcoholic or drug addict. I have never been promiscuous. I never lived anywhere without running water or electricity. I have always used appropriate hygiene. What have I done to deserve this horrible affliction that garners no respect or consideration from doctors for my symptoms?
I didnt go looking for this disease. I am not an alcoholic or drug addict. I have never been promiscuous. I never lived anywhere without running water or electricity. I have always used appropriate hygiene. What have I done to deserve this horrible affliction that garners no respect or consideration from doctors for my symptoms?
# 1,391:
4:46 pm PDT, Oct 2,
Name not displayed, Mississippi
Diagnosed in 2003. I've had it in my eyes, skin, parotid glands, lungs, liver - think i had it in my spleen doctor wouldn't check it. Prednisone caused more problems than it helped - This is a serious disease immune systems are compromised - i also have ulcerative colitis, thyroid problems, diverticulitis. The pain is real! The sickness is real! its time people stood up and gave it the attention it deserves instead of dismissing those of us who are actually trying to find a way to feel better!
Diagnosed in 2003. I've had it in my eyes, skin, parotid glands, lungs, liver - think i had it in my spleen doctor wouldn't check it. Prednisone caused more problems than it helped - This is a serious disease immune systems are compromised - i also have ulcerative colitis, thyroid problems, diverticulitis. The pain is real! The sickness is real! its time people stood up and gave it the attention it deserves instead of dismissing those of us who are actually trying to find a way to feel better!
Sarcoidosis is becoming a problem its time to find out what causes it and how to cure it!
# 1,390:
8:17 pm PDT, Sep 22,
Laura Rudil, New York
I was diagnosed with it my lungs 6 yrs ago... my bones, lymph glands, and bone marrow about a year and I half ago I wish more Dr's knew about this, and how to treat it! You might look fine on the outside, but it causes the Devil inside you!
I was diagnosed with it my lungs 6 yrs ago... my bones, lymph glands, and bone marrow about a year and I half ago I wish more Dr's knew about this, and how to treat it! You might look fine on the outside, but it causes the Devil inside you!
# 1,389:
2:42 am PDT, Sep 22,
Name not displayed, Florida
DX 1992. HAVE HAD A HUGE BATTLE OVER PASTY 18 YEARS.
DX 1992. HAVE HAD A HUGE BATTLE OVER PASTY 18 YEARS.
# 1,388:
6:50 pm PDT, Sep 12,
Barbara gail Bradley, Tennessee
diagnosed at 38 years old finally, after getting a second opinion after three years and being sick for years way before that. even my husband and kids thought it was all in my head. being told in a round about way i can't help you anymore, when all treatments failed and no answers prevailed. no one read my bloodwork correctly or even tried to get to the bottom of this, while I have suffered horribly, back in 2004 before christmas my first i know now official flare up landed me in the hospital after my insistance, throwing up , fever, barelyable to walk, hardly able to bathe self or wipe my own behind, not to mentioning lifting my arms and holding anything,and the depression which no one wants to talk about. only after seeing my nurse practioner who i worked for at one time, did i actually start headed to good doctors. even with the best rheumatologist around he is stumped , whom i see tuesday september 15th and with test results. finally after three years of ct scans and let's wait attitude i got a second opinion from a excellent hem/onc doctor at the hospital i work for looked at everything and gave me the second opinion i needed, a pet scan, a ct guided biopsy where the went between the ribs through the liver down and around to get a lymph node to biopsy. the ones in my lungs bilateral lymphadenopathy, couldn't be reached around blood vessels. now with a high normal ace level and high igg level i know it's sarcoidosis, also i am vitamin d deficient with a level of 10' it's a relief to know what disease i have, now with still more bad days than good and work i will prevail staying on top of researching sarcoidosis, and starting a blog myself.i have constant joint , back and muscle pain, dry eyes, dry mouth, bright light hurts , leg,hip pain.
diagnosed at 38 years old finally, after getting a second opinion after three years and being sick for years way before that. even my husband and kids thought it was all in my head. being told in a round about way i can't help you anymore, when all treatments failed and no answers prevailed. no one read my bloodwork correctly or even tried to get to the bottom of this, while I have suffered horribly, back in 2004 before christmas my first i know now official flare up landed me in the hospital after my insistance, throwing up , fever, barelyable to walk, hardly able to bathe self or wipe my own behind, not to mentioning lifting my arms and holding anything,and the depression which no one wants to talk about. only after seeing my nurse practioner who i worked for at one time, did i actually start headed to good doctors. even with the best rheumatologist around he is stumped , whom i see tuesday september 15th and with test results. finally after three years of ct scans and let's wait attitude i got a second opinion from a excellent hem/onc doctor at the hospital i work for looked at everything and gave me the second opinion i needed, a pet scan, a ct guided biopsy where the went between the ribs through the liver down and around to get a lymph node to biopsy. the ones in my lungs bilateral lymphadenopathy, couldn't be reached around blood vessels. now with a high normal ace level and high igg level i know it's sarcoidosis, also i am vitamin d deficient with a level of 10' it's a relief to know what disease i have, now with still more bad days than good and work i will prevail staying on top of researching sarcoidosis, and starting a blog myself.i have constant joint , back and muscle pain, dry eyes, dry mouth, bright light hurts , leg,hip pain.
# 1,387:
3:35 am PDT, Sep 11,
SHEMENIA BEST, North Carolina
DIAGNOSED 1992
DIAGNOSED 1992
# 1,386:
4:34 am PDT, Sep 2,
Melissa Bolduc, Massachusetts
# 1,385:
12:48 pm PDT, Aug 31,
Name not displayed, North Carolina
I was diagnosed on may 8 2008 after emergency lung surgery. sarcoidosis has now affected my lungs eyes stomach and intestines. I am 37 and I have zero life. My pain level is at an all time high, my bones are crumbling from prednisone and chemo keeps me sick. i am a guinea pig because nobody cares enough to research this and learn about it enough to treat it properly so until i catch something like pneumonia or a bad case of the flu and die and am out of the doctors hair they will only just continue to toss toxic chemicals at me with the hope that maybe something will work. meanwhile i am a moon faced bald woman as side effects only overwhelm me...
I was diagnosed on may 8 2008 after emergency lung surgery. sarcoidosis has now affected my lungs eyes stomach and intestines. I am 37 and I have zero life. My pain level is at an all time high, my bones are crumbling from prednisone and chemo keeps me sick. i am a guinea pig because nobody cares enough to research this and learn about it enough to treat it properly so until i catch something like pneumonia or a bad case of the flu and die and am out of the doctors hair they will only just continue to toss toxic chemicals at me with the hope that maybe something will work. meanwhile i am a moon faced bald woman as side effects only overwhelm me...
# 1,384:
8:27 pm PDT, Aug 30,
Rachel L. King, Tennessee
I found out I had Sarcoid in 2007, been having alot of problems but no one did a chest xray? Then after I was dehydrated (and trip to ER in Ambulance) they found it on chest xray! I still have flare ups now, it seems like everytime I turn around something new shows up and it all points back to Sarcoid. No one wants to listen to all my pains and complaints about this Sarcoid , because they just look at me like well what do you want me to do? I am like I just want someone to take me serious and not look at me like I am just there to see them for nothing!! Just wish there was a doctor that could doctor all of me!!!!!I have not felt good in so long! I dont' even remember the days before this!!
I found out I had Sarcoid in 2007, been having alot of problems but no one did a chest xray? Then after I was dehydrated (and trip to ER in Ambulance) they found it on chest xray! I still have flare ups now, it seems like everytime I turn around something new shows up and it all points back to Sarcoid. No one wants to listen to all my pains and complaints about this Sarcoid , because they just look at me like well what do you want me to do? I am like I just want someone to take me serious and not look at me like I am just there to see them for nothing!! Just wish there was a doctor that could doctor all of me!!!!!I have not felt good in so long! I dont' even remember the days before this!!
I myself have it in my lymph nodes in lungs!
# 1,383:
4:21 pm PDT, Aug 30,
Dee Williams, Florida
I was diagnosed August 13, 2009....But was living with the signs of symptoms of Sarcoidosis for 5 years. I lost my sense of taste and smell 5 years ago and was told I had Anosmia (loss of taste and smell)...I went to the ENT for a normal checkup, but this time when I went the ENT I had the pink eye. My ENT Dr. then gave an emergency referral to the Opthalmologist where they found many many cells in my eyes after running multiple blood test (ACE test was 91) chest xrays showed all kinds of lymph nodes in my lungs and they also mentioned that something was spreading and that Lymphoma and cancer cannot be excluded....I'm told Sarc mimics various diseases....tomorrow August 31, 2009 I will find out my results of what the heck is going on with me........This disease needs more funding and media awareness. Folks I'm scared to death
I was diagnosed August 13, 2009....But was living with the signs of symptoms of Sarcoidosis for 5 years. I lost my sense of taste and smell 5 years ago and was told I had Anosmia (loss of taste and smell)...I went to the ENT for a normal checkup, but this time when I went the ENT I had the pink eye. My ENT Dr. then gave an emergency referral to the Opthalmologist where they found many many cells in my eyes after running multiple blood test (ACE test was 91) chest xrays showed all kinds of lymph nodes in my lungs and they also mentioned that something was spreading and that Lymphoma and cancer cannot be excluded....I'm told Sarc mimics various diseases....tomorrow August 31, 2009 I will find out my results of what the heck is going on with me........This disease needs more funding and media awareness. Folks I'm scared to death
I have Sarcoidosis
# 1,382:
7:22 am PDT, Aug 30,
Paul Bacon, Georgia
# 1,381:
12:31 am PDT, Aug 30,
Name not displayed, Florida
I'm just interested in helping
I'm just interested in helping
# 1,380:
11:19 am PDT, Aug 29,
Maggie Galvan, New York
# 1,379:
9:05 am PDT, Aug 29,
Dawn Leahy, Minnesota
# 1,378:
11:29 am PDT, Aug 28,
Christophe Bedeaux, Canada
Just interested in helping.
Just interested in helping.
# 1,377:
5:03 pm PDT, Aug 27,
Moira Lombardi, Italy
# 1,376:
4:53 pm PDT, Aug 27,
Name not displayed, New Jersey
# 1,375:
4:44 pm PDT, Aug 27,
Vivian OConnell, Massachusetts
My aunt has been diagnosed with sarcoidosis.
My aunt has been diagnosed with sarcoidosis.
# 1,374:
10:04 am PDT, Aug 27,
Mika Buell-joseph, Kentucky
# 1,373:
8:21 am PDT, Aug 27,
Name not displayed, Pennsylvania
# 1,372:
8:17 am PDT, Aug 27,
Judy Penna, Florida
Living with pain and a disease with no known cure or even a chance of anyone looking for a cure is just too depressing............Give everyone with this disease hope, start looking, PLEASE!
Living with pain and a disease with no known cure or even a chance of anyone looking for a cure is just too depressing............Give everyone with this disease hope, start looking, PLEASE!
# 1,371:
6:35 am PDT, Aug 27,
Pauline Burkhart, Florida
# 1,370:
6:13 am PDT, Aug 27,
Faye Aitinidou, Greece
# 1,369:
5:21 am PDT, Aug 27,
Beth Glover, North Carolina
# 1,368:
2:36 am PDT, Aug 27,
Chiara Rognone, Italy
# 1,367:
12:09 am PDT, Aug 27,
Jacqueline Renwick, New Zealand
# 1,366:
9:17 pm PDT, Aug 26,
Desinie Smith, Pennsylvania
# 1,365:
8:40 pm PDT, Aug 26,
Heather Barr, Washington
# 1,364:
7:45 pm PDT, Aug 26,
Tamar Raine, California
# 1,363:
7:43 pm PDT, Aug 26,
Berry Flower, California
# 1,362:
7:36 pm PDT, Aug 26,
Name not displayed, Canada
# 1,361:
7:21 pm PDT, Aug 26,
Nicole Timko, Ohio
# 1,360:
6:48 pm PDT, Aug 26,
Lois Spencer, California
# 1,359:
6:13 pm PDT, Aug 26,
Nancy Schulz, New York
I have never heard of this disease. I will do my research.
I have never heard of this disease. I will do my research.
# 1,358:
6:05 pm PDT, Aug 26,
NorthrunnerCan Glenn Collins, Canada
# 1,357:
5:50 pm PDT, Aug 26,
Mary Miller, Ohio
# 1,356:
5:06 pm PDT, Aug 26,
Carrie Williams, New York
# 1,355:
5:02 pm PDT, Aug 26,
Joanna Grinberg-ayala, New York
# 1,354:
4:51 pm PDT, Aug 26,
Catherine Mims-Yamaguchi, California
My classmate's wife died from this disease.
My classmate's wife died from this disease.
# 1,353:
4:42 pm PDT, Aug 26,
Joel Penny, Michigan
# 1,352:
4:39 pm PDT, Aug 26,
Michael Andrews, California
# 1,351:
4:35 pm PDT, Aug 26,
Gail Garza, Illinois
Let's find a cure!! Spread the word!! No one should have to suffer from such an awful disease.
Let's find a cure!! Spread the word!! No one should have to suffer from such an awful disease.
