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May 10 World Lupus Awareness Day
Cassie Robinson
May 10 World Lupus Awareness Day
Story
May 10th is World Lupus Awareness day. I want to help raise awareness and much needed funds to help and find a cure. There are still so many that don't know about it, which is why I am doing this now.
Lupus belongs to a group of connective tissue diseases. Some of these include Systemic Sclerosis (Scleroderma), Sjogrens Syndrome and Rheumatoid Arthritis.
There are different types of Lupus including Systemic Lupus Erythematosus (SLE), from what I believe, is the more serious form. It affects a person including kidneys, brain, heart, lungs, skin and blood. As well as pain and fatigue. It can come and go at anytime and affects both men and women.
Some don't know, but I was diagnosed with SLE a few years ago. But most don't know how this actually affects me and I want to share a rough day with you. I have joint and muscle pain which, can range to a simple feeling of being punched or it can feel like broken glass ripping through skin and muscles. Severe fatigue, fevers for no reason, hands fingers toes and feet go purple/blue/white (Raynaud's Phenomenon) and swelling in my legs, face and lymph nodes. This isn't my worse day, but almost average for me.
When I was first diagnosed, it was difficult to figure out what was going on. The scariest moment was when they called me and said they believed I had cancer, as my tumour markers were 10 times the normal range. But severe inflammation can cause these markers to rise and I was cleared of the cancer scare. One of my worst experiences was being rushed to hospital under the belief I had meningitis.I was sensitive to light, severe headaches and unbelievable pain. After extensive tests including a lumber puncture, I was cleared of meningitis and later explained that It was most likely a severe flare. It took me a week in hospital on multiple medications to start feeling normal again. It's something I would not wish on anyone.
Specialists, blood tests and medications are a constant part of my life. Some of these medications can have very bad side affects. I was on a chemotherapeutic drug to suppress my immune system as well as prednisone (steroids) to bring the inflammation down. Learning and knowing where my boundaries are also very important and have had to learn when to rest up before I flare up. For those that don't know, "Flare" is the word used when the disease is active and can occur at anytime.
To date, there is no known cure. SLE and the other immune conditions listed above can leave patients severely incapacitated and even cause death. If you can donate to help raise much needed funds and research to help find a cure for this, please click on the link and donate. Remember, anything over $2 is tax deductible.
Thank you for your support and help raise awareness.
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Lupus Foundation
Lupus Foundation is the most active lupus organisation in Australia with international recognition across the globe. The organisation, run by volunteers, is self-funded receiving no state or federal funding; hence, we rely heavily on fundraisers and the kindness of others to donate. ALL our services are FREE of charge which includes are newsletter, Lupus ‘The Wolf Within’.
The Foundation’s primary objective is to provide quality care and services; educating and supporting people with lupus, their families, carers, health professionals and the general public in all States. Along with, continuing to research and support research for better treatment with the ultimate goal of one day finding a cure for lupus.
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