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When I was newly diagnosed with sarcoidosis, I was scared and overwhelmed. I had never really been sick before and I didn’t know what to expect. So this post is dedicated to anyone who has recently been diagnosed. These are all the things I wish someone had told me then.

  • Don’t panic.
  • Educate yourself about the disease. It’s likely you’ll end up knowing more about the disease than a lot of doctors do.
  • There is no known cause or cure. Treatment is aimed at minimizing harm to organs and symptom relief only.
  • The side effects of the treatments for this disease are sometimes harder to manage than the actual symptoms of the disease.
  • It can take a while to get a proper diagnosis. Don’t be surprised if the word cancer comes up. Sarcoidosis mimics a lot of other diseases.
  • The only sure diagnosis is through a biopsy, but sometimes ruling out everything else will get you the answer, too–just not definitively.
  • If a doctor blows off your symptoms…find another doctor.
  • Learn to advocate for yourself with medical professionals and always take someone with you who you trust to doctor appointments. That person wll hear things you don’t and can take notes for you.
  • Sarcoidosis can impact any organ. It’s not a lung disease.
  • Even if sarcoidosis is not impacting your eyes or heart, get both examined, anyway; and then be sure to get regular eye exams annually, no matter what.
  • You will have good days and bad days. Don’t let the bad days get you too down and enjoy the good ones.
  • Even though having this disease is disruptive, strive to maintain some normalcy.
  • For a large number of people, this disease does go into remission: so you won’t know for sure for yourself for a while. Be patient.
  • Don’t believe everything you read on the internet about sarcoidosis.
  • If a treatment sounds too good to be true…it probably is!  Watch out for “snake oil salesmen” who promote such things.
  • Keep your sense of humor. In fact, expand your sense of humor.
  • Connect with others who have the disease so you don’t feel so alone, but don’t assume whatever is happening to them will happen to you. This disesae is very invidual.
  • Expect people to tell you that you look good and to be dismissive of your experience, but don’t take it personally. They don’t know any better and you need all your energy to go into taking care of yourself.
  • Easier said than done, but try to avoid stress.
  • Many people with sarcoidosis also have sleep disorders: so ask about getting a sleep study done.
  • The fatigue that comes with this disease is powerful and lingering. You are not lazy.
  • Sometimes the best specialist to help manage all the strange and sometimes vague symptoms of the disease is a rheumatologist.
  • Examine your diet and eliminate foods that make your symptoms worse.
  • Try to find a way to get regular exercise as it can help manage some of the symptoms.
  • Don’t feel guilty when you can’t do something.
  • Accepting that you have this disesae is a process. Be kind to yourself.
  • Get and keep copies of all of your medical records.
  • Remember that no matter what this disease does to you…you are still YOU!
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