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Wrapping up Seeing [MS]: The invisible symptoms

Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers: “I’m burnt alive every day.” “A single bead of sweat can bring me to my knees.” “I can be struck down in just seconds.” Over the past year, we’ve been featuring quotes, pictures and videos from the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about visualizing the invisible symptoms of MS and raising awareness for the neurological condition. We’ve covered nine symptoms: blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. If you missed anything, watch the video below for a full recap. While there may be no more Seeing [MS] photographs, there will always be more symptoms, experiences and knowledge to share to help raise awareness for all things MS. There are more than 39,000 people living with MS on PatientsLikeMe, and many have contributed their own symptoms to the Seeing [MS] forum thread. If you’ve been diagnosed with MS, visit the community today. And a very special thanks to the patients and photographers whose hard work made Seeing [MS] possible.

Seeing [MS]: The invisible symptoms – numbness

“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and there is a barrier there.” Listen to Adriana speak about her symptom below: You are now seeing numbness Photographed by Nicholas Walton-Healey Inspired by Adriana Grasso’s invisible symptoms Adriana worked with photographer Nicholas Walton-Healey to portray her numbness in a picture and video. Their work is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Seeing [MS]: The invisible symptoms – balance

Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak about her MS below: You are now seeing balance Photographed by Andreas Smetana Inspired by Carol Cooke’s invisible symptoms To help others understand this, she worked with photographer Andreas Smetana to portray her MS symptom in the picture above. Her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Seeing [MS]: The invisible symptoms – brain fog

Australian Jessica Anderson has been living with multiple sclerosis since she was 12 years old, and she says brain fog is the scariest symptom she experiences, especially not being able to gather and make sense of her own thoughts. During her worst moments, she can barely focus on a thought for more than 30 seconds. Listen to Jessica speak about her symptoms below.   You are now seeing brain fog Photographed by Sara Orme Inspired by Jessica Anderson’s invisible symptoms Jessica and New Zealand photographer Sara Orme worked together to visualize Jessica’s brain fog, and her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Seeing [MS]: The invisible symptoms – fatigue

“It’s like I’m deflated. I don’t feel like doing anything.” That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly under siege.   You are now seeing fatigue Photographed by Juliet Taylor Inspired by Darcy McCann’s invisible symptoms Darcy worked with award-winning photographer Juliet Taylor to capture how he feels when enduring bouts of fatigue. His video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Seeing [MS]: The invisible symptoms – dizziness

Lyn Petruccelli is living with multiple sclerosis, and she fights random waves of vertigo and dizziness that can strike her at any moment. Sometimes, the feelings are so strong, she can’t even get out of bed. As Lyn says, “I can’t see it coming, and that makes it hard to fight.”1   You are now seeing dizziness Photographed by Louis Petruccelli Inspired by Lyn Petruccelli’s invisible symptoms Lyn’s husband Louis is an accomplished photographer, and they worked together to visually portray what it’s like to live with the possibility of dizziness every day. Their photograph is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS. 1 http://www.seeingms.com.au/ms-stories

Seeing [MS]: The invisible symptoms – spasticity

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.   You are now seeing spasticity Photographed by Matt Hoyle Inspired by Tim Ferguson’s invisible symptoms He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Ovarian cancer – taking early action

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms. In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS: 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives. Ovarian cancer ranks 5th in cancer deaths among women. The lifetime chance of passing away from ovarian cancer is 1 in 100. If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community. Share this post on Twitter and help spread the word for ovarian cancer.

Let’s talk about Huntington’s Disease

May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time. According to the National Institute of Health (NIH), HD can only be passed down from parent to child through a genetic mutation. If a child has a parent with the HD gene, he or she has a 50% chance of inheriting it – and all people who have the gene will eventually develop HD.1 The Huntington’s Disease Society of America (HDSA) states that about 1 in 10,000 Americans are affected by HD, and symptoms typically begin between the ages of 30 and 50.1 2 There is no current cure for HD, but some treatments help to limit certain symptoms like involuntary muscle movement. If you’re looking to learn more about HD or get involved during HD Awareness Month, the Huntington’s Disease Society of America (HDSA) has a great advocacy video up on YouTube (check it out below), and the organization is always looking for e-advocates to join their “Let’s Talk about HD” campaign. And you can always find support and info from others that …

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