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Sarcoidosis is a rare disease and it can be difficult to find the right information. Whether you have recently been diagnosed or have had sarcoidosis for a few years, it is important for patients to stay up to date and informed, so they can work with their physician to find the best possible treatment plan. 

How to be an Empowered Patient:

Being an empowered patient means being educated, equipped, and engaged.

  • Educated: Patients with a sarcoidosis diagnosis should educate themselves on sarcoidosis, as well as new research, treatment trials, and other resources available to them. FSR recommends patients follow the advice below in “How to Find Good Information” and to confirm any findings with a physician.
  • Equipped: Empowered patients will be equipped in several ways: being prepared before doctor’s appointments (see our resource Preparing for an Appointment for more), as well as staying well educated and actively seeking support, in order to be mentally prepared to deal with their disease.
  • Engaged: Empowered patients use their knowledge to participate in treatment decisions with their physician, as well as practice good self-care methods.

How to Find Good Information:

There’s a lot of misinformation about sarcoidosis, especially online. This can make finding reliable information on the disease and treatments difficult. Here are a few tricks to help make sure you’re getting reliable information:

  • Check the end of the website domain: if it ends in .gov, .edu, or .org, you know the website it being run and monitored by either a government agency, and educational institution, or a noncommercial organization. Both .gov and .edu resources are reliable the page is endorsed by the institution and is not the page of an individual presenting their personal opinion. On the other hand, a .org website may provide biased information if the organization has a specific agenda they are trying to promote.
  • A .com web domain does not necessarily mean the information is biased or incorrect, it simply means you should be careful and verify information you find with another web resource or with a medical professional.
  • Check who wrote or contributed to the content on the page: most reliable pages will site the author of the content. It is best to stick to content written by medical professionals or pages that cite resources written by medical professionals.
  • Websites of medical institutions are reliable resources, but don’t always have much detail since sarcoidosis is such a rare disease. Website of foundations and organizations solely committed to sarcoidosis, either in research, patient care, or treatment, will usually have the most
  • When in doubt, always ask a physician who has experience working with sarcoidosis. If you are looking for a physician in your area, check out our Physician Directory

FSR Recommendations for Good Self-Care:

FSR is a strong advocate for patients following good self-care routines. By maintaining a healthy lifestyle, as well as staying on top of your mental health, patients can ensure a better quality of life.

Stay Active

While one of the main symptoms of sarcoidosis is fatigue, patients are still encouraged to participate in light to moderate exercise when possible. Staying active increases bone and muscle strength, which helps you maintain mobility and keeps your body working efficiently, as well as boost your mood. A healthy diet is just as important as exercise.

Eat Right

A healthy diet is just as important as exercise. Patients should aim to eat a balanced diet with plenty of fruits and veggies, whole grains, and choose lean, healthy fats. Foods rich in antioxidants are also thought to have anti-inflammatory properties, which could potentially reduce some symptoms. If you’re a smoker, quit. 90% of sarcoidosis cases affect the lungs. Smoking only causes further damage and will dramatically worsen symptoms.

Manage Stress and Mental Health

Having a chronic illness can increase stress and affect your mental health. The frustration of treatment and the symptoms of sarcoidosis are daunting, but it is important to find ways to cope with these feelings. Stress can exacerbate your physical symptoms, and your interpersonal relationships may be affected as well. FSR offers online resources to help you find a local support group or join our online support community on Inspire. Talking with other patients can provide an outlet for your emotions and help build a strong support system. If you are experiencing depression or anxiety, talk to your doctor to see what steps you can take next.

Get Involved

FSR urges patients to be an involved member of the sarcoidosis community. Whether it’s through support groups, raising awareness and hosting fundraisers, participating in clinical trials or joining the FSR patient registry, there are many opportunities for patients to get involved and be proactive to help stop sarcoidosis.

When to Seek a Second Opinion

Sarcoidosis is a rare inflammatory disease and not all doctors will have a comprehensive understanding of the disease, or of the various treatment options available. On average, patients go to at least four doctor’s appointments before they receive a confirmed diagnosis of sarcoidosis- in some cases, it can be many more. This is why it is so important to find a physician who understands sarcoidosis and your exact symptoms- someone with ocular sarcoidosis may need to see a different doctor than an individual with cardiac sarcoidosis. Here’s how to know when you should seek a second opinion:

  • If you feel uncomfortable with your physician- you should always feel safe and assured when talking to a doctor. If for any reason you feel that your doctor is not committed to understanding your diagnosis or finding the best treatment plan, you may need to seek another opinion. Keep in mind that many patients try multiple treatments before finding a medication to help their symptoms, so do not feel you need to switch doctors just because the first treatment you try does not work, unless your doctor seems unwilling to explore other treatment options.
  • If your doctor does not stay informed on sarcoidosis while working with you- a doctor’s job is to treat their patients, and if they have agreed to treat you then it is their responsibility to stay educated and informed on sarcoidosis treatments and clinical trials. This does not mean a patient should not also work to remain educated- doctors and patients need to work together in order to find the best treatment for each individual.
  • A good physician should never discourage a patient from getting a second opinion. Many welcome another doctor’s input and outside perspective. A different doctor might recommend a different treatment or treatment style. There’s no harm in exploring your options to find a doctor who is a good fit for you and your disease.

FSR offers an online Physicians Directory to help you find a doctor in your area who understands sarcoidosis. We urge you to check it out if you feel you are not getting adequate care or you would like to seek a second opinion.

Additional references:

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