share: "Sarcoidosis" a silent killer

I am sorry that you have this terrible disease. I was first diagnosed in 1998. I had severe chest pain with it. I took prednisone for nine months and I thought it was gone. But after eight years, it came back with a vengence. I am now on oxygen, when I go out to stores, or just walking. I had three more episodes of having to take prednisone to get it back into submission. I am always at risk for more damage to my body, but there is not a lot you can do with it. My body's organs have to be monitored for sarcoidosis. We are looking for it to travel to other places in my body. So everytime I get sick again I have to deal with mri's, and other tests to see if my body parts are still working. I have two leaking heart valves that I didn't have two years ago. So be sure you get with some good doctors to help you survive what you have. I live from day to day. I have trouble everyday, but I try to keep the depression away from my door. Its not easy, but you can do it. There is a lot of us who have sarcoidosis out here. We live everyday. Good luck to you.

Thank you for sharing your story. I've never heard of this disease, either.

For those of you interested, you may visit EmpowHer's Sarcoidosis page for more information.

I have a sarcoidosis too. It has affected my vision a lot in these years. The vision on one eye is now only 20% and on the other 90%. I just hope... I was diagnosed a few weeks ago, but uveitis started 12 years ago. Sacroidosis caused uveitis and vision loss.

Thank you to all you brave women posting comments on sarcoid. What a confusing and difficult disease to understand, even to the doctors. I was dx a year ago, then had a clear scan, but now another shows my sarcoid is back. Its in my eyes, sinuses and lungs. My lung doc and I decided no meds for now, I am post menopausal and that could present issues. I have good days, bad days..and all inbetween. It may also have gone neuro...am waiting to find out but honestly wont be surprised. The best thing going for me? A dear friend helps take care of me, the most understanding person I could have asked for. I was not sick before we lived together and it seems it doesnt make a difference, I could never do this by myself so you can imagine how lucky I feel. Family is not so understanding, as in many cases. I feel so fortunate to live where I do, have good doctors and someone who understands. It is a scary disease. It is far too easy to get carried away with so much negative so I try hard not to do that. One day at a time.

Hi .
My name is Kamini, my mum was diagnosed with sacoidosis of the lungs, two years ago. At first, we went through hell...she was ill all the time...bed ridden. We thought we were going to lose her. Then, finally with the rock steady help of my uncle, a GP, it was detected. They intially suspected tb, as my dad and sister had this condition. they are very similar, the granulomars are different in a scan it can be detected.
About a month ago, i started to have all the symptoms{fevers, night sweats, head aches, body and joint pain, weakness and generally tired all the time. It was different from my mums. The first thing I did was consult her. Gps thought flu, I knew my body. At the momemt my uncle is doing ace levels test...it could be in my liver. much better than the lungs.
Is it genetic or stress related...i was under heavy stress and my mom contracted after my gran (her mom) and my dad passed away. Is the cause depression?
Also, there is alot of mould in my mums home?

Writing about it makes me feel better...we need to find the cause.
my family and husband are very supportive, I am lucky.

Hi Kamini - Thanks for writing and sharing your situation with us. I'm sorry to hear about your mom, and that you are dealing with your own health problems. It's good to know that writing helps you to feel better - I feel the same way.

Scientists really don't know what causes sarcoidosis but they believe it's related to malfunctioning of the body's immune system. The disease may possibly be triggered by an infection or exposure to a toxin in the environment. Scientists also believe that some people may be more susceptible to sarcoidosis due to genetic or environmental factors. It is more common in people who are of African-American, Northern European, Scandinavian, and Irish descent. Researchers are still trying to pinpoint the genes and trigger substances that may be associated with sarcoidosis. There aren't any indications at this time that depression or stress would be a direct cause.

I'm going to provide a link to our section on sarcoidosis, as well as some additional articles with information on the causes, symptoms and treatment. The last link is to a directory of US support groups. If you're not in the US just let me know what country you're in and I will see if I can find a group for you there. I hope you will find this information helpful, and wish you well as you continue your testing.

Take care,
Pat

http://www.empowher.com/condition/sarcoidosis

http://www.mayoclinic.com/health/sarcoidosis/DS00251

http://www.medicinenet.com/sarcoidosis/article.htm

http://www.sarcoidlife.org/

I have suffered with Sarcoidosis for nearly 20 yrs. My father passed away on 12/10/09 from the disease and my sister has also been diagnosed. 4.11.11 would have been my dads 76th birthday. In an effort to honor his memory and bring an awareness to Sarcoidosis, I am hosting a photo contest on Purple and White (Sarcoidosis) Day on 4.13.11. I am looking for the most creative photos of individuals or groups wearing Purple and White. Photos must be sent to: tlc004@aol.com electronically by 4.15.11 midnight. Winners will recieve a Visa gift card in the following amounts $25(individual) or a $50 (group). Your photo submission gives me permission to use the photos in a collage at our Annual Awareness and Education Day on 4.20.11. My goal is to have one photo from each of the 50 states. Additionally, if you would like your name read and a candle lit for you just send your name and state. God bless all of my Sarc brothers and sisters. I pray that we find a cure before another father is lost to this disease.