At the beginning of April I was diagnosed with Lupus, that diagnosis in the last couple of days has been turned out to be wrong, instead I have Hughes Syndrome – sticky blood. But enough about me I wanted to write this post to help spread the message.
May 10th is World Lupus Day, its aim is to help raise awareness of the disease. Yet many people have never heard of Lupus, worldwide it is more common that leukaemia, multiple sclerosis and muscular dystrophy. Take it from someone who knows, when you are diagnosed you are very much left to figure it out for yourself. Due to my diagnosis I have been doing some research and have spoken to some wonderfully friendly and helpful people at Lupus UK, because of this I feel compelled to write this, to help their cause and to help spread the word.
So what is it? – ‘Systemic Lupus Erythematosus (SLE) causes the body’s immune system to go into overdrive and start to attack itself. They symptoms are many and varied, the illness often seems to mimic other diseases. This gives rise to difficulty in diagnosis an the condition can be overlooked…. sometimes for years.’ Lupus UK flyer. Can you imagine going to the GP time and time again when you know you are not right and that something is wrong and yet not coming away with an answer?
What causes it? – things such as puberty, after childbirth, through sunlight, menopause, viral infection treat with antibiotics , result of a trauma or after a long course of medication. 50,000 people in the UK are thought to suffer the disease and 90% of these are women, although it can affect men and young children as well.
What are the symptoms? – they are very varied but some of the ones which Lupus UK quote are
- Extreme fatigue
- Joint & muscle pain
- Eye problems
- Mouth ulcers
- Facial or other rashes
- Possible involvement of kidneys, heart, lungs or brain
What can you do to help?
- Lupus UK is a registered charity – you can find out more about their work here.
- There is a World Lupus Day websie where you can pledge to help spread the word, you can sign up to the pledge here
- The Facebook page can be found here – there are many people raising money to help to try and find a cure, there are examples of people that live every day with the disease and also a U-tube video talking about the importance of World Lupus Day
When I was first diagnosed I contacted Lupus UK and spoke to a lovely lady who has had Lupus herself for over 35 years. To talk to someone who not only has the disease, lived with it and lives a happy and fulfilled life is invaluable. The charity also produces information in the format of a DVD and booklet for newly diagnosed patients as well as other publications. This information has helped me get to my final diagnosis. Thank you Lupus UK.
Please help spread the word further by linking this post to your social media accounts.
All comments and opinions are my own.