Receiving the right diagnosis at the right time is crucial when it comes to living with a rare disease. However, for many people with periodic fever syndromes the path to diagnosis can be long and bumpy.
Rare diseases, such as autoinflammatory conditions like SJIA, AOSD and periodic Fever syndromes FMF, TRAPS, HIDS/MKD, CAPS are subject to a lack of general and scientific knowledge and understanding about the diseases. This lack in knowledge and understanding often results in people with rare conditions like periodic fever syndromes feeling stigmatised, isolated, and excluded from their social community.
Receiving the right diagnosis at the right time is crucial when it comes to living with a rare disease, not only in relation to the implications it can have on one’s health, but also on one’s social life and interactions. However, despite the importance of getting the diagnosis right, over 25% of people with rare diseases currently wait 5 to 30 years from when their symptoms began to when they receive an appropriate diagnosis and 40% receive an initial wrong diagnosis. Find out more about the path to diagnosis here:
So, what makes it so difficult to diagnose rare diseases like periodic fever syndromes?
Raising awareness of and educating people on rare diseases is one of the most important things we can do to help people who affected by these conditions to help ensure that they receive the right diagnosis at the right time, as well as the understanding and support that they need.
Periodic Fevers are asking for your help to spread the word about rare autoinflammatory conditions such as periodic fever syndromes and the challenges associated with diagnosing these diseases, by following us on Facebook and Twitter, if you are not already doing so, and sharing the video above with the people around you.
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