Sarcoidosis Awareness Month April 2020

Amidst the chaos that the Covid-19 pandemic has brought to our world, a lot of things have been put on the back burner. But this month is Sarcoidosis awareness month and such is my determination to shine a light on this condition that I wanted to do my bit to raise awareness.

This year the fundraising and awareness effort is going to be severely hampered by Covdi-19 with no activities possible, no matter how long they have been in the planning. It might be seen as ironic at the time when the world’s attention is on a disease that targets our lungs; sarcoidosis makes a target of the lungs of around ninety per cent of people who are diagnosed with the condition. Although sarcoidosis is rare and it does not trip off the tongue it is very real to those who have it.

Hardly a crowd
Sarcoidosis is not well known and the sufferers are relatively few. Add to that the fact that it can be fiendishly difficult to diagnose and people start to lose interest. That is unless they suffer from it and have experienced its cruel effects. I am one person who suffers from this invisible disability and shows no outward signs that there is anything at all wrong with me. But I know that inflammatory cell clusters, that are known as granulomas, can develop in my lungs and lymph nodes although they’re not fussy and can occur in other places too, like the skin and the eyes, the heart and the kidneys. That is daunting.

A Lone struggle
The likelihood of you ever meeting a person who is suffering from sarcoidosis is very small. Because there are usually no outward signs of the disease it can be a lonely life for the sarcoidosis sufferer who is constantly looking for answers, wondering if the latest symptom is another manifestation of the disease, or something unrelated.

For those reasons the groups that support sarcoidosis sufferers are very important to us and it would have been so good to be in the spotlight this month for sarcoidosis month rather than sharing that spotlight with Covid. Instead of the activities that are planned then, this is going to be my attempt to spread awareness on line.

Parallels
We know that those who contract the Covid-19 virus have a fight on their hands and those who do not lose their lives to the disease have a long road to recovery. I see parallels with the struggles that sarcoidosis sufferers face when they have an ‘episode’. As nations and as social groups and individuals we will need all the fight we can collectively muster to return our world and our lives to normal after Covid.

But for this month I am going to bang the drum for sarcoidosis awareness because I believe that we need to raise consciousness about this most secretive of diseases. If you are a fellow sufferer, then lets stand together and if you are not then look it up and read about it – be sarcoidosis aware.