What is Sarcoidosis? Your FAQs Answered

1. What causes sarcoidosis?
The cause of sarcoidosis is unknown. There are many theories of what causes sarcoidosis including infections, substances in the environment, and man-made substances. Some examples of these are the bacterium that causes acne, mold in the air, and photocopier toner. However, none of these is proven. There is mounting evidence that there is not one cause of sarcoidosis but many potential causes depending on the immune system of the patient.

2. Will my children get sarcoidosis if I have it?
Children will likely not get sarcoidosis. If you are an African Americans, the odds that a first degree relative (brother, sister, mother, father, child) will get sarcoidosis if you have it is 20% (1 out of 5 chance). If you are white, the odds are 6% (about 1 out of 20 chance). Both of these odds are low. However, these odds are much higher than the odds in the general population of getting sarcoidosis (20 to 40 per 100,000). Because the odds are so much higher of a patient with sarcoidosis having a first degree relative with the disease, it is thought that there is probably a genetic aspect to the development of sarcoidosis.

3. Should I check my child to see if he/she has sarcoidosis if I have sarcoidosis?
This is not recommended because the odds are still relatively low of a child of a sarcoidosis patient developing sarcoidosis. In addition, sarcoidosis rarely occurs before age 16 so this should not be considered in a young child. It is only recommended that a child of a sarcoidosis patient be checked for the disease if they have symptoms which might suggest sarcoidosis and they are older than 16 years old.

4. Can I donate blood if I have sarcoidosis?
Yes, you can. There is no recommendation against a sarcoidosis patient donating blood. Sarcoidosis has never been demonstrated to be transmitted by blood transfusion.

5. If my spouse has sarcoidosis, can I catch it from him/her?
It doesn’t appear so. Husband and wives both have sarcoidosis so rarely that it is thought to be a coincidence.

6. What sort of diet should I eat if I have sarcoidosis?
There are no official recommendations concerning this. However, it makes sense to live a healthy lifestyle including eating a healthy diet. This is especially important in persons who take steroids, as fatty and high carbohydrate foods will tend to cause excessive weight gain.

7. I have sarcoidosis. Since sarcoidosis can affect any part of the body, how can I be sure that a symptom that I have is not related to sarcoidosis?
It is best to use common sense. If you can relate the symptom to another health problem, then it is probably not related to sarcoidosis. However, if you cannot, sarcoidosis should be considered. For example, if you have a cough, nasal congestion, and fever for 2 or 3 days then you probably have a cold. However, if it lasts 2 to 3 weeks then these symptoms cannot be explained by a cold, and other diseases such as sarcoidosis should be considered.

8. Can I exercise if I have sarcoidosis?
Absolutely. You should try to stay as healthy as you can. However, don’t overdo it. If you are exhausted by the amount of exercise that you are doing then your body is telling you that it’s too much. On the other hand, it is important not to be as active as possible.

9. Does sarcoidosis cause fatigue?
Yes. This is an underappreciated symptom of sarcoidosis. It also usually does not respond well to steroids and other medications used to treat sarcoidosis.

10. I have sarcoidosis. Even though I feel sick, I don’t look sick. Sometimes I get frustrated that my employer, spouse, other loved one, friend, or relative doesn’t believe that I’m ill. Any suggestions?
Patients with sarcoidosis may develop extreme fatigue. They also may develop significant pain from sarcoidosis. However, they may look well. It is important to educate loved ones, relatives, and employers about sarcoidosis. Education may involve taking them to a patient support group.

To learn more about clinical trials and drug studies on sarcoidosis, click here.