Sarcoidosis & SarcoidosisUK
Sarcoidosis is a rare disease and has poor information, support and little research for finding a cure. SarcoidosisUK work to change that. Their 4 goals: information, support, awareness and research. They receive no government money and are 100% reliant on donations. Any donation makes a huge difference.
My Story
I’m new to sarcoidosis. This time last year I’d never heard of it. I started experiencing problems in April last year and was given a sarcoidosis diagnosis in the middle of August. Those four months of pain, fatigue, confusion and uncertainty were the hardest for me and my family. Since getting the diagnosis and being provided with medication, my symptoms have reduced dramatically and I’m currently back living my normal life. It is early days in my sarcoid journey and I don’t know how my body will respond as the medication is slowly reduced and withdrawn. With this disease it appears everyone responds differently – I may be left with a chronic condition that flares up regularly, or this could be a one-off episode that fades in my memories.
I appreciate that I am luckier than most who suffer from this disease. I didn’t experience any obvious symptoms until I was over 60 and I was diagnosed relatively quickly. Many people get it at a much younger age, experience far worse symptoms, and go undiagnosed or misdiagnosed for years.
Sarcoidosis is considered a rare disease, somewhere in the region of I in 10,000 people in the UK are diagnosed with it. When you include the undiagnosed and misdiagnosed the rate is probably considerably higher. For a rare condition it came as quite a surprise to me that my immediate neighbour has also suffered from it. This is her story:
Sarah’s Story
I was one of the “lucky” stories as my sarcoidosis was picked up from a routine x-ray as part of a diving medical. Although it was benign at the outset it developed into something more severe over time and after my first child.
I learnt a vital lesson about letting time pass without properly listening to medical advice. I had a high dose of steroids which I fortunately responded well to and kept on a regular level of steroids for a number of years. I was advised not to get pregnant again until the sarcoidosis had gone – the assumption was this would be only a couple years. Sarcoidosis stayed with me for a lot longer so it was deemed ok to get pregnant on a low level – I had 2 more children on what was deemed a safe level. Ultimately after restarting steroid treatment twice I came off it completely after nearly 20 years.
I am lucky because I had no symptoms initially and it was picked up by my GP who “happened” to be interested in diseases presenting in the lungs/chest and questioned the very small shadowing. Not sure it would have been picked up by anyone else and this was what my consultant told me.
Other stories
If other people wish to share their stories, I’ll include them here. SarcoidosisUK also have a page devoted to sarcoidosis stories.
One Man And His Boat 