Having an unpredictable illness is almost impossible, dealing with those who don’t understand is harder. With this project we go (virtually) around the Globe, raising awareness by asking people to take photos of "Sarcoidosis" and where they are in the world. This web is the result.

 

When you’re told you’re chronically ill with a disease you’ve never even heard of, your world becomes so much smaller. This project is to show that sarcoidosis is a global issue that requires global solutions.

 

Sarcoidosis has many types and forms that affect every aspect of our lives. With pulmonary Sarcoidosis there is shortness of breath and reduced lung function. Neurosarcoidosis can cause hearing loss, weakness, numbness, muscle pain and memory loss. With cardiac Sarcoidosis there is dizziness/ fainting, palpitations and chest pain. But this is just the tip of the iceberg. So many other random symptoms: from swollen painful lymph nodes to endless coughs, night fevers to impaired eye-sight, sickness to skin rashes.

 

Sarcoidosis-associated fatigue is globally recognised as a disabling symptom. Overwhelming tiredness has been reported in most sarcoidosis patients, causing drastically impaired quality of life. It is not just tiredness, it is utter exhaustion. It is as if someone switches off our light and we can do no more. If we push past it we get very sick. It isn't helped by sleep. It is rather like flu, a sapping destructive force that exhausts us, contributes to brain fog and an inability to live a normal life. Living with Sarcoidosis we are always 3-5 seconds away from needing to lay down and sleep. Even with treatment it is considered the hardest element of Sarcoidosis to solve.

 

The support and guidance from SarcoidosisUK, all the people like myself and all the others in between, have made this journey a little bit more bearable.