Sarcoidosis - Describe Your Experience

Not ready to share? Read other Patient Comments

Please describe your experience with sarcoidosis.

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black square:

What is sarcoidosis?

Sarcoidosis is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes.

The cause of sarcoidosis is unknown. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime.

As sarcoidosis progresses, microscopic lumps of a specific form of inflammation, called granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment. In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic).

Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson's disease or Boeck's disease. Dr. Boeck went on to fashion today's name for the disease from the Greek words "sark" and "oid," meaning flesh-like. The term describes the skin eruptions that are frequently caused by the illness.

Return to Sarcoidosis

See what others are saying

Comment from: DonnaMRN, 45-54 Female (Patient) Published: May 09

I was first introduced to sarcoidosis when my brother was diagnosed in his early 20s. All that was said at that time is that it wasn"t cancer and not life threatening. My brother is now 59 and he manages his sarcoidosis well. In 2000 I was working as an emergency room (ER) nurse and had a horrible bout of severe joint pain, shortness of breath, erythema nodosum (EN) over my lower legs, and fevers. I was taken to the ER and initially diagnosed with lymphoma. Then a pulmonologist thought it could be sarcoidosis, I had a mediastinoscopy to remove a nodule between my lungs and it was positive for sarcoidosis. Since that time I have been treated with IV steroids, methotrexate, antidepressants, Plaquenil, oral steroids and most recently Remicade for the all over joint pain. At this point I am resolved that this disease has no clear cut answer. I try to live my life as fully as I can but, am limited by the beast called sarcoidosis. To my fellow sufferers, do not retreat. If your current doctor is not helping, seek another until you get some relief.

Was this comment helpful?Yes
Comment from: mycousinissick, 45-54 Female (Caregiver) Published: May 12

My cousin is barely 40, with 2 young kids, 8 and 4. She can"t remember the last time she felt well. She is fatigued, exhausted all the time, but is the one cousin always having people over, going to parks, outing, taking her kids to the park, all for the sake of living despite her illness. She has inflamed lymph nodes, it"s now affecting her sight and memory, and she thinks it"s getting worse. The doctor is avoiding steroids due to the harsh side effects. She"s afraid to read any more about how horrid this sarcoidosis is, because there doesn"t seem to be any good news. I think she could use a support group. She would like another opinion. Hoping for everyone's healing.

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!