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Rare Disease Day – Sarcoidosis Awareness

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.

Symptoms

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 

Swollen glands

 

Causes

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.

 

Diagnosis

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.

Endoscopy

 

Treatment

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.

Have you recently been diagnosed with Sarcoid? Then why not head over to SILA  – The Sarcoidosis Charity and The British Lung Foundation for more help and information.

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?

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9 Comments

  1. Kim Carberry

    February 28, 2017 at 11:31 am

    I have never heard of this disease….
    I am glad you are well at the moment and I hope it stays that way. It’s great that you have a fab team working and caring for you xx
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  2. Rhian Westbury

    February 28, 2017 at 11:56 am

    That’s so good that your symptoms are going into admission. Thanks for the information, it’s important for people to know more about different conditions x
    Rhian Westbury recently posted…Creating DIY Shelving And Styling ThemMy Profile

  3. Lisa Backsnbumps

    February 28, 2017 at 5:06 pm

    I wasn’t aware of this condition before reading your post. I’m so pleased the doctors have got your condition under control and are looking after you. Like you said it’s important to remember that what works for one person doesn’t for another. Sometimes this can be a bit upsetting when you’re searching for a way to relive your symptoms.

  4. Ana De- Jesus

    February 28, 2017 at 10:15 pm

    I have to confess this is my first time hearing of sarcoidosis but I am sorry to hear you have it as it sounds horrible. Thank goodness that you have a good support team looking out for you x x
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  5. Lyndsey O'Halloran

    February 28, 2017 at 10:46 pm

    Really glad to hear you’re doing well at the moment and I hope it stays that way!
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  6. Cliona

    March 1, 2017 at 8:59 pm

    I hadn’t heard of this disease but it sounds really difficult and it must have been tough for you to deal with the diagnosis. I think it’s always good to raise awareness of unusual conditions, especially when they come under the umbrella of invisible illnesses. My daughter has Ulcerative Colitis and suffers going pain and fatigue and many other symptoms that people don’t always get.

  7. Mrs H

    March 1, 2017 at 9:55 pm

    I have never heard of sarcoidosis before. Thank you for writing this. It is important that people are made aware of all these unseen conditions. My best friend has Spinal Muscular Atrophy and that is another very rare disease. She is amazing. As are you. I am so glad to hear that you are in remission. Hugs Lucy xxx
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  8. Fashion and Style Police

    March 2, 2017 at 12:12 am

    Wow I have never heard of this illness before. I am happy to know you are doing well and everything is under control.

  9. Lisa

    March 6, 2017 at 1:02 pm

    Thanks so much for sharing this with us. I had never heard of this condition either. So pleased to hear you are currently in remission, long may it last #MMBC
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