I don’t know if you are aware, but today is Rare Disease Day. Just under twelve months ago, after various tests and CT Scans it was brought to my attention that I had Sarcoidosis. I’ve never really spoken of it on here before, but knowing at present that there is no actual cure, I feel every it’s so important to raise awareness of this awful condition.
What is Sarcoidosis?
Sarcoidosis causes little granulomas (lumps of swollen tissue) to form in the organs of the body. I have Pulmonary Sarcoidosis (of the lungs). It can also effect your heart and skin. It is said that the immune system goes into a kind of “over-drive” and the body starts attacking itself and it’s organs.
Swelling in the lower legs
Erythema Nodosum – A painful red patchy rash on the shins or arms. This was the very first symptom I experienced. I woke up one morning and was absolutely mortified when my arms and legs were covered in this bumpy red rash.
Feeling generally unwell and lethargic – I felt so ill at the start. I felt all feverish and all I wanted to do was lie down on my bed and be quiet.
Breathlessness – I am a very keen gardener and I remember just before I took really poorly, I couldn’t even carry out mowing the lawn. After one length I was gagging for air, it was just awful.
Painful Joints – My neck and back still ache from time to time.
Abnormal Heart Rhythm
The actual cause of Sarcoidosis is unknown. There are a few suspected factors, but there is no actual proof that any of the following are related. Research is currently on-going to try and find the triggers.
Environment – It is said that this may effect susceptible people who carry the gene.
After numerous trips back and forth to the doctors, I was finally hospitalised via A&E. There I went on to have blood tests, oxygen readings, X-rays and a CT scan. The CT scan clarified that I had stage 3 Sarcoidosis.
Some people don’t even need treatment as it can disappear on it’s own. Some people can have acute sarcoid and have it clear up as quick as it come on. only needing to take ibuprofen or paracetamol. Others can experience no symptoms and have chronic sarcoid which progressively gets worse over time. Maybe even needing steroids to relieve symptoms and immunosuppressants to help control your immune system. Everybody is different and what works for one, may not be practical for another.
My symptoms have thankfully gone into a state of remission if you like, so I am currently attending regular lung function tests to monitor my condition. It was initially quite a shock when I was diagnosed with Sarcoidosis. However, being under a fab professor and an amazing team, I feel safe in the knowledge that I’m in good hands.
Lets beat this together!
Perhaps you are raising awareness for Rare Disease Day? I’d love to hear about it in the comments!
Why not pin me for later?