A Cure

Everybody out there with Sarcoidosis; Do you know that thier is no cure for our Disease. Why? Because Nobody is looking for one, NOBODY. It is like we are the lepers, the lost, most people never even heard of our disease. Why? Because it is rare; bull hocky sticks, NOBODY will take the time to research our disease.Why? IS it because only Black and other ethnic background people get it? The Dr. told me I have it because of my Native Amercian Background that I am only part of. Nobody is even trying to raise money to start research. Do you think we could get together as a group from Team Inspire and raise money. Who would we have to see? Anyone interested? Anyone care about finding a cure? I sure do. please reply back. Susan

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There is actually quite a lot of research being done the world over, particularly in the US, Holland and Japan. None of it has led to any definite answers yet and that is not unexpected when talking about a disease of the immune system.

Applaud your desire to get involved. There are quite a lot of members busy with projects that have been quite succesful; walk-a-thons, cookbooks, dinners, websites . . . . .I am sure you will get some good responses.

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A cure would be nice - but you are wrong to say "only Black and other ethnic background people get it". A lot of people on this board are not black or ethnic. Many of us are European or Australian, or simply white American.
Don't feel targetted - you didn't get it because of your bloodlines.

Keep praying for a cure - in the meantime, there is a world wide study that is going on - you can contribute by going to www.sarcoidstudy.org and signing up. The more of us who help by giving information about our particular sarc, the more likely they are to have a successful study.

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I understand your frustration Susan. Before I address anything else, I think your doc is sadly misinformed. There is no determined cause for those of us who get sarcoidosis. There are theories, of course. It is also true that some races show more sarcoid then others and even statistics vary on severity of disease course across races. If they tried to put in sarcoid literature all the nuances and crummy things that happen to us from this disease, it would be overwhelming. There are several organizations such as the one you just posted on that raise money and several members and family members of sarcoidosis sufferers that hold fundraisers to donate to research. I am sure that others will post links to trial studies and if you do a search for maybe sarc fundraising, you will get your answers. Those people that raise money for us are true angels as some of us are debilitated to the point of physical , emotional and financial exaustion. They carry the flag for us. April was declared sarcoidosis awareness month in 2007/8 by congress. Bernie Mac foundation just opened a specialized facility. I too hope for a cure one day that will cure ALL of us. In the meantime, I do what I can to survive and support all the people here on this site with a hug, a slobber, a wink and whatever else might make almostCOnative spit out her coffee...

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LOL. CO are you listening?

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Yes I am... bwa ha ha! Haven't poured my coffee yet, as I am in Omaha with my stepmom. Poor iPad dodged the bullet so far this morning ;-D

Susan- your doctor is a numnut; use this site to educate yourself, there are great resources here. Definitely sign up for the WISE study, and watch for the upcoming clinical trials- one is in Denver.

Just wait, LoopyLana: I'm going to report on my adventures in HelenWorld, once I get home... worth a chuckle or two, if I don't pull out all my hair first- or put dents in my forehead from banging it against the wall at night. (Deep breathe, deep breathe- I love my stepmom, I love my stepmom...)

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My retina specialist told me the same thing, he said mostly black people get this disease. Obviously many other folks get sarc but apparently there is a belief or some reason they say that. Many many people are expected to acquire some type of autoimmune disease. It has been proven that diet can as well other lifestyle changes can help manage sarc, ms and even cancer. The medical community is finally admitting that. Cancer for example has been researched for years and a lot of money has been raised for research but still no cure coming from a drug. Cancer is a multimillion dollar disease. If your looking for a drug for sarc you'll be waiting for a very long time. You can manage this illness if your willing to make some lifestyle changes. You can become so dependent on the drugs it's hard to break away from them. We have a challenged immune system that would normally fight disease for you. The drugs being used for Sarc just further suppress the immune system causing an endless cycle that keep you from getting better not to mention the terrible side affects . Do your own research. I've been dealing with Sarcoidosis since 1988, took Prednisone for a year and a half weened myself off it and learned to control sarc naturally. There is definitely a mind body connection when it comes to our bodies healing. So a man thinketh in his heart so is he, according to the Bible. If you tell yourself I'm sick I'm sick you will remain sick. At the same time you have to eat properly, reduce your sugar consumption, eliminate the chemically riddled products you clean and wash your clothes with. You can do this.

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I think we all share your frustration. As has been mentioned already, there is quite a bit of factual information out there if you have time and energy to search and sort through it. This may help put things in a happier perspective for you
http://stopsarcoidosis.org/
Also, the ACCESS study done several years ago is very interesting to read
http://www.medscape.com/viewarticle/470113_3 and the people on this forum are a treasure trove of information and support.

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I'm of Scandinavian and German descent, both populations where the disease is more prevalent than in the general population. Doctors that say only African Americans get it are just plain uneducated about the disease.

But here's our challenge.... if you look up the prevelance rate for sarc, which ranges from 20 to 70 people per 100,000 that means that there are about 250,000 people in the US who have sarcoidosis.

As contrast, there are millions and millions of people who have cancers or heart disease, the 2 big killers. If you were in charge of the limited public funding that gets allocated to disease eradication, you would spend the money where it would impact the most people, too. Add to that the fact that most people don't die from sarc, even though their lives can be impacted to a great extent, then it falls down the priority ladder even more.

Even something like autism, which is also unexplained and can have devasting affects on it's sufferers, affects about twice as many people as does sarc.

Susan, I get just as frustrated as you are about the lack of good treatment options, let alone a cure. It just means that means that awareness and fund raising are in OUR hands because no one is going to do it for us. Sign up for the Wise study and clinical trials. Take every opportunity you can to tell people about the disease. Find others in your area, form a support group, and raise money for FSR.

Think you can't make a difference? Breast cancer has funding and awareness way out of proportion to it's impact on womens' lives (heart disease kills more women than breast cancer and is funded far less) because of the impact of one woman.... Susan B Komen. And just recently, 2 entrepreuners/philanthropists from St. Louis, Marvin and Harlene Wool, made a $500,000 donation to FSR for sarc research.

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bottem line there are supposed studies, and like most diseases sarcs i don't think gives a flying flip about ones back ground...does cancer,ms,or diabeties? give me a fricken break!!!

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The above people have given you some information about things that are being done. I do hope we have given some Hope that some people to care and are doing something.

Clicking on the red,white and black FSR logo on this site will lead you to a list of research studies being conducted on this disease. It will also show you how you can contribute financially to research into this disease.

May I please suggest you say a calming prayer and starting reading about research and fund raising that IS being done on our behalf.

DJ - the Calif sarkie getting well

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The Dr. is the one who told me that there is no study being done in the USA because of lack of Money or of care. It's not just something I am saying.

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I'm sorry but your doctor is very ill informed. I hope he is better informed about when and how to treat and how to monitor the disease properly.

Current studies being done are the WISE study which I and many on this site are participating in (and I encourage you to sign up for) and the GRADS study which will be recruiting shortly. DJ can tell you about Dr. Koth's ongoing study into blood markers.

If you go to the link below and do a search on sarcoidosis you will see all the types of research being done world wide and what the current status is:

http://www.clinicaltrials.gov/ct2/results?term=sarcoidosis&pg=1

Hope this helps and does not discourage you from actively promoting awareness.

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SpiritWolfStarr,

When I was first diagnosed, my sister took my great nephew to the pediatrian for lung problems and told her that both I and another sister had sarcoidosis, the doctor looked at her and said, "Well, we both know there was a "BAD BAD RACIAL SLUR" in the wood pile." My sister got so mad. She bawled that doctor from one end of the doctors office to the other. Not only about the racism but about the lack of knowledge. I am pretty sure she reported her in the paper in her city where she practiced and on the internet too.

This doctor still would not accept that sarcoidosis was not African-American. As you can see, so many doctors are not only misinformed but just plain ignorant and racist and stupid and, and, .......... don't get us all started. lol

Believe me you have come to the right place to get good advice about sarcoidosis and doctors.

Tammie

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Susan, you will quickly learn that the people on this site are often far more versed in what's happening with sarc than our doctors are.
There is a marvelous collection of knowledgeable, courageous, funny people on here who make an effort to share what they've found and what they've learned for all of us to read.

And it makes sense that the latest info is here, we care about 1 disease, sarc. Our doctors have to think about and keep track of hundreds of different conditions.

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wow,i did not know of 122 studies,alot are completed and yet here we are........................................................................ ........................................................................... ........................................................??????????????????? ??????????????????????????????????????????????????????????????????????????? ??????????????????????????????????????????????????????????????????????????? ?????????????????????????????????????????????

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Not much different than with any other immune disease.

I don't know of any immune disease where a cure has yet been found.

The more we learn the less we know ;-(

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I am a 66 year old white male retired Registered Nurse. When I first got diagnosed, the first question asked me by the "specialist" was: "Why do you have sarcoidosis? You are are a young Black woman." I was 56 years old when I was diagnosed with Sarc. Then I have Celtic/Scandinavian ancestry and am still a health care worker.

A cure? This is a tough disease , as the cause is not yet known: environmental, genetic, autoimmune, bacterial? Who knows for sure. There are many theories, and there could be spectrum of causes, or a combo of causes.

HIV got the big bucks years ago, and most research on Sarc. got put on hold or short changed. It was not as spectacular as HIV/AIDS, and not as lethal.

I would do anything to volunteer to work on Sarc. research: nursing, lab tech, research. Let me know if you all hear of anything.

Thanks, Gary

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There is a LOT of research going on.

The team at Johns Hopkins completed a study in 2009 that may prove to be a breakthrough. However, it usually takes at least a decade for a new discovery to turn into an approved treatment. Since the nature of this discovery is so entirely unexpected, I expect it may take quite a bit longer. (There are no off-the-shelf drugs that inhibit TLR-2 or break down amyloid proteins.) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2822973/ - Serum Amyloid A Regulates Granulomatous Inflammation in Sarcoidosis through Toll-like Receptor-2

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There is research done. Your dr is not only a numnut but obviously doesn't take the time to research what he is telling you. There are places like the Cleveland clinic, studies in holland, and drug studies being done. Everyone above gave you good advice. If there weren't anything being done we would all only be on prednisone. My grandmother was given prednisone only and she died of sarcoid at 62 . I have the ability to get iv infusions and take immunosuppressants to shut down the disease some... So who came up with these things? Obviously drs who research

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hmmm,since its availability,pred has been the go to for sarcs,even when it should not have been...don't think so,i'll bet the majority of respondents on this site have been poisoned with pred,oops! i mean treated! not sure that studies have really given more or better treatments,if so why do so many suffer for 5plus yrs........studies need to absalutelybe done to find a cure instead of what most doctoring involves......covering up,here try this for pain and if it helps then why bother trying to cure. so tired of it all, if certain dr.s & hospitals are so great,then why are alot of us just as bad now or worse,5 plus yrs or more.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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