Multiple sclerosis (MS) is an autoimmune disease which affects 4 Australians every working day.
MS is a neurological condition where communication between the brain and central nervous system (brain, spinal cord and optic nerves) is damaged – resulting in issues such as extreme fatigue, chronic pain, mobility issues right through to total and permanent disability.
In recognition of WORLD MS DAY, we introduce inspirational and emotional stories about how this ‘invisible disease’ has not stopped them from living life the best they can. This is to amplify awareness for Australians to understand what this disease is and helpful tips on early diagnosis of MS to positively impact those who may be unaware of their own symptoms, current population diagnosed with MS as well as their loved ones.
The invisible disease is non-discriminatory and its unpredictability makes MS such a challenging disease, physically and mentally. The MS Walk + Fun Run on 5th of June 2016 – proceeds will go to support services for those with MS and their families.
A Few Inspirational Stories (The Speakers):
Stephen Papadopoulos (36 yo) was diagnosed at 22 (2001). He lives in pain 24/7. His clothing hurts and stronger winds when he is walking causes him pain. He gets only 2–3 hours’ sleep due to sharp stabbing pains, constant sensation of pins and needles. He works part-time for MS speaking and raising awareness.
Cathy Merrett (49yo) was diagnosed at 23 (1990). She grew up heavily involved in sport, playing netball and tennis up to four times a week. She had a high influence to her sons, Zach and Jackson Merrett who now play for the Essendon Football Club. She has had some negative experiences from the public and even her family – however she pushed on to be there for her boys. Zach Merrett fondly recounts, “she has an ability to never give up or sacrifice what she wants to do even though her body might not permit, she will always try find a way to do it.”
Sam Moynihan, (27yo) was diagnosed at 23. He is a student studying Psychology and fell into a bout of depression when he was first diagnosed He found it hard to connect with young adults in his situation and didn’t find appropriate literature for his age. He founded “Fully Sick MS” a blog that has created a community for individuals to share their stories and offer support. His blog was nominated for Bupa’s 2014 Blog of the Year and he recently shared his story at Parliament House to discuss commitments for MS Australia.
Jamie-Marie and Helen Genito: Helen was diagnosed only 5 weeks after Jamie-Marie was born. She lost vision in both eyes and could hardly walk. Two years later, Helen received a phone call in the middle of the night to news that her husband had unexpectedly passed away The shock resulted in Helen having a major relapse leaving Helen with permanent progressive weakening to the left side of her body and ongoing tremors. Jamie-Marie is now a full time carer for her mother and receives no carer’s allowance as she is a minor. ”She’s the best mum in the world!” Jamie-Marie says, “She’s always there for me and I can always talk to her about anything – I even tell her all my secrets. I know she can’t do everything that all my friend’s mums can do, so I always make sure she doesn’t get too tired.”
The cause of MS remains unknown, but Marion Simpson, neurologist, suggests it “most likely is a combination factors, with genetics, viral triggers, vitamin D levels and sunlight exposure all playing a role.” MS has such varied effects from each patient, occurring at any age, but most commonly in young adults. It can affect both sexes though it is much more common in women. It can take years before people are officially diagnosed due to the “it’ll pass” mentality. Depending on the part of the nervous system affected, the symptoms are highly variable. Marion gives us insight into how to be aware of signs and symptoms of MS, “we now believe that early diagnosis and early initiation of treatment can dramatically improve outlook in patients with MS.” Marion suggests that people should not take neurological symptoms lightly and if experiencing any symptoms like the below they should speak with their doctor:
- Visual Disturbance
- Loss of balance
Marion stresses the importance of family and friends to be aware of “invisible” symptoms including:
- Sensory Symptoms
- Bowel Problems
- Poor memory
- Mood disorders
NEW IMPORTANT MS STATISTICS
Multiple sclerosis (MS) is one of the most common neurological disorders and causes of disability in young adults. There are 2.3 million people with MS worldwide. It is likely that hundreds of thousands more remain undiagnosed and many lives are affected indirectly, through caring for someone with MS. Most people with MS are diagnosed between the ages of 25 and 31, with around twice as many women diagnosed than me.
The severity of the course of MS as well as the symptoms can vary widely among individuals – these can include blurred vision, weak limbs, tingling sensations, unsteadiness, and fatigue. For some people, MS is characterised by periods of relapse and remission (meaning it gets better for a while but then can attack from time to time), while for others it has a progressive pattern (meaning that it gets steadily worse with time). Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly.