What is Sarcoidosis?

Sarcoidosis is a condition where lumps called granulomas develop at different sites within the body. These granuloma are made up of clusters of cells involved in inflammation. If many granuloma form in an organ, it can prevent that organ from working properly. Sarcoidosis can affect many different parts of the body. It often affects the lungs but can also affect the skin, eyes, joints, nervous system, heart and other body parts.

In September 2017 my little brother became poorly. No one knew what was wrong with him. Doctors thought he had had a nervous breakdown and they sent him home. By January the 2nd he had lost 30kg as he was unable to eat , urinate or walk. He was bedridden. My bother lives so Norway. I got a flight out there to see him on the 2nd January 2018 and what I saw was shocking . That day he was  taken to A&E. When I got to him he couldn’t speak , walk , move blink or anything. I meant over and whispered in his ear ‘I love you ‘ and he managed to whisper  back ‘I love you too’. No other communication or words would come from him for weeks.

A few days later after fighting for him to be seen by top doctors they diagnosed him him hydrocephalus and Neurosarcoidosis. They operated and he was sent to a rehabilitation centre for people with brain injury. He was wheelchair bound , didn’t know where he was or what was going on and had to have 24 hour care . 

For a short period of time he seemed to be getting better with lots of treatment and meds. Magnus had a flare up last autumn which made him much worse. He is now bedridden . He now had not only Neurosarcoidosis but also Sarcoidosis of the lungs, heart problems , kidney problems and gets numerous infections like sepsis yet he never ever complains .

I am helping him as much as I can but ultimately I can’t take this illness away from him. It’s a cruel illness and he seems to have got it very bad. I want to give awareness to this disease and also to do more to help people who have been diagnosed with it . 

Walking the 50kg of the Thames Path is a little challenge compared to what people with NS .

This story is the short version and kind version. The last few years have been very traumatic for the whole family and has had a massive impact on us all. Like I am sure it had for many families with a family member diagnosed with a chronic debilitating illness. 

So please get your cards out and help get some research for a cure for this illness 

Thank you all xxx

SarcoidosisUK is a tiny charity that exists to provide support and information for people with sarcoidosis, and to fund research into a cure for the condition. It is currently the among the world’s largest sarcoidosis research funders, and is passionate about helping to find a cure. SarcoidosisUK is dedicated to funding at least one major piece of research per year, and will continue to do this until a cure is found. Please donate - we rely on your support to keep going!