NEWLY DIAGNOSED WITH SARCOIDOSIS?
What is Sarcoidosis?
Sarcoidosis is a rare inflammatory disease that can affect many different parts of the body. It causes small patches of swollen tissue, called granulomas, to develop in organs of the body. It commonly affects the lungs, the lymphatic system and the skin.
Watch Professor Simon Hart’s video explainer of sarcoidosis.
What support is there?
Being diagnosed with a rare disease like sarcoidosis can feel isolating, but you are not alone. SarcoidosisUK is here to support you. We work to make sure you have the best support possible, whether it is from us directly, others with sarcoidosis, or medical professionals, we can help you understand your diagnosis.
If you want to talk about your diagnosis:
Schedule a call with our Nurse Helpline to discuss symptoms, treatments and any other questions you have. Our Nurse Helpline is a free service run by nurses who all have experience, either personal or professionally, with sarcoidosis.
If you want to connect with others like you:
Join our Facebook groups where you can meet others in your position, ask questions, and learn about sarcoidosis. All our Facebook groups are closed and moderated so you can feel comfortable sharing and talking there.
We have local support groups where you can meet with others who share your experience. Our groups are really friendly and are all run by volunteers who are personally affected by sarcoidosis.
If you want more information about sarcoidosis:
Sarcoidosis is a rare disease and that means it is not as widely understood as it should be. Learning as much as you can so you can advocate for yourself and understand what your body is going through is important. We have a number of free resources available to give you all the information you need.
We have 14 different leaflets that provide information on different types of sarcoidosis, as well as other important topics such as fatigue and treatment.
Our FAQ page is a great place to find out more about many different aspects of the condition, from ‘Day to Day Living’ to ‘Treatment’.
We also have a Consultant Directory, if you are looking for a consultant. This is a map of consultants that we know of as having an interest in sarcoidosis. You can filter by location and specialism.
We regularly host Sarcoidosis Patient Days with where you can learn more about the condition. You can watch past events here.
What happens now?
Many people with sarcoidosis do not need to have treatment at all. The Royal Brompton and Harefield Sarcoidosis Clinic states that the only reasons for treating sarcoidosis are:
1. to prevent organ damage or dangerous disease
2. to enhance quality of life
If you do need treatment for organ damage, this will usually start within weeks. This may be sooner for cardiac or neurological involvement.
What is the outlook?
Sarcoidosis gets better without treatment in most cases. In others, the condition may persist and require treatment.
In the minority of patients that develop a more serious form, a more aggressive and prolonged treatment is sometimes required.
Approximately 15% of people with sarcoidosis affecting the lungs require treatment, whilst 10% of people with sarcoidosis affecting other areas of the body require treatment.
Have a consultation coming up?
We have a ‘Get Ready for your Consultation’ Guide available to download ahead of your next appointment.
We know that meeting a consultant to discuss sarcoidosis symptoms and treatment can be stressful. This simple guide helps you to think about the topics you would like to discuss with your doctor and keep an accurate record of your medical history. There is also some space for you to make notes so that you can remember what is said, especially if you attend your appointment alone.
As sarcoidosis affects every patient differently, you can tailor this guide to suit your needs and your consultant’s style.
