Happy Valentine's Day warriors and happy February. We hope you are all having a month filled with love and kindness. There were a few very important awareness days for the chronic illness community this month! The second week of February is Feeding Tube Awareness Week (Feb. 7, to Feb. 11, 2022.) Information about this week of awareness can be found below as well as an exclusive interview with Lauren Burleigh, who uses a feeding tube. Over 100 countries celebrated Rare Disease Day on February 28, 2022. Read to find out how you can get involved for next year! Also found in this month's issue is our Spoonie Small Business segment and Chronic Illness In The News segment. Let's get started! |
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Feeding Tube Awareness Week Feb. 7 to Feb. 11, 2022 |
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Feeding Tube Awareness Week was this month! There are over 350 medical conditions which can require someone to use a feeding tube. The site below is a source to learn more about feeding tubes. | | |
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Lauren Burleigh is a university student studying biology. She uses a feeding tube and was kind enough to sit down with us to discuss feeding tubes and feeding tube awareness. Lauren says a great resource for feeding tube support is through Facebook groups. Watch her interview below for all the details! |
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Our guests this month for our Spoonie Small Business segment are florists Kate and Harry. Kate and Harry have their own small business in Hamilton, Ontario. Their work as florists is inspired by impermanence and the changing seasons. Check out their website here. Kate battles Hollow Viscous Myopathy. Harry is her partner, business partner and caregiver. We had the honor of sitting down and speaking with both of them. You can watch the interview below! |
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Rare Disease Day February 28, 2022 |
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Rare Disease Day was created in 2008 and is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. 300 million people currently live with a rare disease, that is 3.5%-5.9% of the World's population! |
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Chronic Illness In The News |
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Welcome back to our Chronic Illness In The News segment. Here, we share articles and any other documents which either involve, impact or surround our chronic illness community. We are expanding this segment further! If you have an article you came across yourself which you really enjoyed and want to see it in this segment, we want you to share it with us! Also, we are opening a forum. We want to hear your thoughts and opinions about the articles we post in this segment, and get a discussion going! (Thoughts and opinions can be about an article you came across, or about one you saw in here in the newsletter!) This is a great way to connect with people within your community and a chance to have your voice be heard! You can send the articles and thoughts to our Newsletter Coordinator Megan, at megan.bocchinfuso@fightlikeawarrior.org with the subject line "Chronic illness in the news." |
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With Chronic Illness, the Silence of Others Is DeafeningOne of the hardest things about living with a chronic illness like myasthenia gravis (MG) is the dialogue that doesn't happen with people we know. The eye rolls we perceive when we try to update loved ones about our health status - whether they're real or not. |
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New 'Sesame Street' Theme Park To Be Sensory FriendlyA new theme park designed to bring the iconic show "Sesame Street" to life will have a host of accommodations in place to welcome children with disabilities when it opens soon. Sesame Place San Diego will be designated a Certified Autism Center when it opens to the public next month, officials said. |
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Andy showed signs of allergic reactions at 15 years old. Years later a doctor told her she had Mast Cell Activation Syndrome (MCAS.) Shortly after this she developed and was diagnosed with gastroparesis. She was also then diagnosed with POTS. After being told she had a dairy allergy, and three years and five doctors later, Andy's doctor noticed she had hypermobile elbows and suggested EDS could be the reason she was having so many conditions at once. The term for this is also known as comorbidities. She was later diagnosed with an official hEDS diagnosis. Andy and her service dog Obi Wan are seen in the photo above. Obi Wan was originally meant to be her service dog for dairy alerts. Now, Obi Wan is her medical support dog. Obi Wan helps Andy with POTS episodes and with mobility tasks. Andy is also a small business owner who makes service dog gear! You can check out her Instagram page here. |
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The next Spoonie Meal Saturday will take place on: March 12th @ 7:00pm EST/4:00pm PST
We will be making: Chicken Burrito Bowls (serves 6) One Saturday of each month, we will be going live on Instagram to bring you a virtual cook-along of a delicious meal meant for spoonies. These quick and easy meals can be altered to meet specific dietary restrictions and will be perfect for making on those days where you're low on spoons but don't want to sacrifice tastiness! We will be posting the recipe, accessibility requirements, and possible substitutions you might use for the meal each month in our newsletter. That way you have time to get your ingredients so you can cook right along with us if you would like to! These videos will be saved on our social media pages if you weren't able to come to the Instagram live or if you want to cook the meal again! We encourage you to submit your own “spoonie meal” recipes that you love to kelsey.calimer@fightlikeawarrior.org to help us build up this excellent resource for all others living with a chronic illness or disability and for the chance for us to make it in our cook-along! These can be recipes you have created yourself or ones you have found elsewhere and have grown to love! |
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