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Tag: immune system disorders

  • Parenting 101: #MyTealPumpkin : Making Halloween safe for Quebec’s 100,000 children with food allergies

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    Halloween can be difficult for children with allergies, who are often left out due to the distribution of risky treats. Once again this year, for the 9th edition of #MyTealPumpkin, parents, neighbors, friends, and businesses are invited to participate in large numbers so that every child can feel fully included in the celebration. Launched in the United States in 2014, the initiative now shines in about fifteen countries.

    On October 31st, painting a pumpkin turquoise or displaying the visual on your door (available here) signals to families that non-food treats are available for children with allergies, ensuring a safe and inclusive Halloween.

    “Food allergies represent a major and growing health issue in Quebec. When we know that up to 8% of young children in Quebec live with food allergies, and that this segment of the population has increased by 18%, I believe the #MyTealPumpkin initiative takes on its full meaning at Halloween. This activity provides us with a wonderful opportunity to raise awareness among young and old alike,” said Dominique Seigneur, Communications Director at Allergy Quebec, in a press release.

    Anaphylaxis is a severe reaction that can be fatal in just minutes. It is estimated that up to 75% of people allergic to peanuts will be accidentally exposed during their lifetime. In Canada, ten so-called “priority” allergens have been identified (peanuts, wheat, milk, mustard, tree nuts, eggs, fish and shellfish, sesame, soy, and sulfites) as they cause the majority of severe reactions. In total, more than 160 allergenic foods are listed in the country.

    – JC

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  • Celebrate Juneteenth by promoting Black health, wealth and joy | CNN

    Celebrate Juneteenth by promoting Black health, wealth and joy | CNN

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    CNN
     — 

    June 19, 2023 is the third annual observance of Juneteenth. The federal holiday commemorates June 19, 1865, when the enslaved people in Galveston, Texas, learned of their emancipation two years after President Lincoln signed the Emancipation Proclamation.

    Although Juneteenth has recently become more widely recognized, the date has long been a deeply spiritual time of remembrance and celebration for the Black community.

    Across the country, African Americans have rejoiced with fireworks and cookouts, sipping red drinks – a nod to ancestors’ bloodshed and endurance.

    “We know the horrors that we went through,” explained Kleaver Cruz, writer of the forthcoming book “The Black Joy Project” and creator of a digital initiative of the same name. “It’s always concurrent: the joy and the pain. We use one to get through the other.”

    On a particularly joyous note, this June 19, CNN and OWN (both properties of Warner Bros. Discovery) will simulcast Juneteenth: A Global Celebration for Freedom at 8 PM Eastern time. The concert will feature artists across multiple genres including Charlie Wilson, Miguel, Kirk Franklin, Nelly, SWV, Davido, Coi Leray, Jodeci and Mike Phillips. CNN will kick off pre-show coverage at 7 PM Eastern time, highlighting Black advocates, trailblazers, and creators.

    “We get to celebrate our freedoms; we get to celebrate the dismantling of things and lean into what we want in the future,” Cruz said of Juneteenth observance. “We want more of that space and less of the one that harms us.”

    The Black community still struggles with pain and inequity. Impact Your World has gathered ways you can help reject the pathology of racism and thoughtfully celebrate Juneteenth through non-profits that support Black health, wealth, joy, and overall empowerment. You can donate to those charities here.

    For Black Americans, the end of slavery was just the beginning of a 158-year quest for equality. Along the way, the cumulative effect of institutional and systemic racism fomented stark disparities in income, health, education, and opportunity.

    “Those that came before us were physically free but were unable to earn livable wages or receive an education without its share of defeating challenges,” said Marsha Barnes, Founder of The Finance Bar.

    Data collected by the Board of Governors of the Federal Reserve System shows that in the fourth quarter of 2022, the average Black household’s net worth was about one-fourth that of the average White household.

    “Taking the time to address the racial wealth gap highlights many of the roadblocks we as Black Americans currently face,” explained Barnes, a certified financial therapist. She sees the well-documented connection between financial literacy and financial wellness as a key to enhancing wealth in the Black community.

    “We still are at a disadvantage, but it’s important we become comfortable with having to learn while playing the game,” Barnes told CNN.

    HomeFree-USA is a non-profit aiming to close the racial wealth gap by improving financial education, homeownership, and opportunities. Their Center for Financial Advancement (CFA) recruits, trains, and places Historically Black College and University students into internships and careers with mortgage and real estate companies. The goal is to enhance diversity in the financial sector, expose students to credit and money management and help them become savvy consumers and future homeowners.

    The African American Alliance for Homeownership is a non-profit counseling agency that helps families obtain, retain, maintain, and sustain their homes. The organization offers HUD-certified counselors who support first-time homebuyers and foreclosure prevention. The group recently expanded its services to help homeowners with estate plans, resource navigation, home repairs, and energy-efficiency upgrades.

    Former NFL Player Warrick Dunn started Warrick Dunn Charities in 1997 to help single parents buy homes by providing $5,000 down payments and home furnishings.

    “The more I learned, we wanted to get into the business of giving people the potential to break their cycle of poverty,” Dunn explained in a 2021 interview with CNN.

    The non-profit has expanded its priorities to include financial literacy, health and wellness, education attainment, workforce development, and entrepreneurship support.

    The National Urban League is committed to the advancement of African Americans through economic empowerment, equality, and social justice. The organization champions education, job training, workforce development, and civic engagement through community and national initiatives.

    The legacy of racism in America continues to fuel health and healthcare inequities for Black people.

    “We’re seeing diseases that, when I was in medical school, I thought to be diseases that would start to develop in people in their fifties, sixties, and seventies. I’m seeing these diseases sometimes in teenage years,” said Dr. Barbara Joy Jones, an Atlanta-based family medicine physician.

    According to the CDC, five health conditions particularly affect the Black community at higher rates: cardiovascular disease, human immunodeficiency virus (HIV), metabolic syndrome, colon cancer, and mental health conditions.

    “I consider hypertension, Diabetes, and obesity the triad,” said Jones.

    The leading contributor to that triad is what you eat.

    “Diet is 80% of health, and just access to quality food and education about food has been very hard,” Jones explained.

    “When you go back and look at slavery, the foods we had to eat were the last scraps, so through the passing down of culture, you’re eating foods that are not the healthiest because it was simply for survival,” said Jones.

    According to Feeding America, eight of the ten US counties with the highest food insecurity rates are at least 60% Black and one in every four Black American children is affected by hunger.

    Addressing food insecurity, nutrition education, and better food access can make a difference.

    Feeding America runs a network of food banks in those mostly Black hard-hit counties.

    Share Our Strength runs a program called Cooking Matters offering cooking classes, grocery store tours, and digital content to help marginalized families across the country shop and cook with an eye towards health and budget.

    The African American Diabetes Association uses targeted outreach projects to help Black people prevent or delay type 2 diabetes.

    Despite progress over the years, racism continues to impact the mental health of African American people.

    “The stress and microaggressions that happen daily for a person of color in the work environment and everyday life add up, and unmitigated stress can lead to disease,” Jones told CNN.

    The Black Mental Health Alliance and the Trevor Project, provide training and networks of mental health providers specifically supportive of the Black and Black LGBTQ communities.

    In 2019, the CDC found that Black people comprised 41% of the new HIV infections in the US. The Black AIDS Institute was founded in 1999 to mobilize and educate Black Americans about HIV/AIDS treatment and care. The Black AIDS Institute advances research, support groups, and education and runs a clinic catering to BIPOC and underserved communities.

    As recently as the 1990’s, unethical medical research was conducted on Black Americans. The Tuskegee Study is one of the most widely recognized examples of the racist practice that led many Black people to distrust the healthcare system and avoid doctors altogether.

    Beyond investing in cultural sensitivity training and prioritizing preventative care, Jones said, “For anti-doctor people, find someone that looks like you; representation matters.”

    “Half of the getting to know your part of medicine is to know why psychosocial and economically you are where you are, and having a doctor that looks like you can support that.”

    Only about 5.7% of US physicians identify as Black or African American, according to the Association of American Medical Colleges.

    The White Coats Black Doctors Foundation is working to increase diversity in the medical profession, supporting educational preparation to become a doctor and helping offset the costs associated with applying and transitioning to residencies.

    Janice Lloyd of Annapolis, Maryland watches a Juneteenth parade in 2021.

    Black joy has been essential for survival, resistance, and self-development for centuries. But these days, it’s often exploited and misunderstood.

    “I see the ways that Black joy at this moment is being commercialized or co-opted to make it feel like it’s Black people smiling,” lamented Cruz. “It’s much, much deeper than that.”

    Cruz launched the Black Joy Project as a photo essay on social media in 2015 following the deaths of Michael Brown and Sandra Bland to help the Black community process its collective pain.

    “I posted it on Facebook in the stream of consciousness and said, ‘Let us bombard the internet that joy is important too, and as people are sharing these traumatic videos, we have to make space for joy.’ And it was an invitation for anybody else that wanted to do that.”

    Enslaved Black people knew they weren’t free but still hoped their future generations would be. That empowering optimism gave them the will to press forward, no matter the circumstance.

    “This (joy) is just a continuation of those practices,” Cruz said. “Joy is intrinsic. It’s something that can’t be taken from us because it comes within us; it’s always ours to have.”

    Juneteenth is a celebration of freedom, culture, and history, and it’s important to uplift non-profits that positively nourish the arts, music, and all the things that foster Black joy.

    The Robey Theatre Company was founded in 1994 by actors Danny Glover and Ben Guillory to tell the complex stories of the Black experience. The theater showcases and develops up-and-coming actors and playwrights to sustain Black theater.

    The Debbie Allen Dance Academy uses dance, theater, and performance to enrich, inspire and transform students’ lives.

    As some states are moving to block Critical Race Theory and Black history from public education, the Legacy Museum: From Enslavement to Mass Incarceration gives visitors an interactive history lesson on the harsh repercussions of slavery and systemic racism in the US. The immersive exhibition carries visitors through the transatlantic slave trade up to the current mass incarceration of Black people. The museum occupies a site in Montgomery, Alabama where enslaved Black people were historically auctioned off.

    “If we’re being serious about Black joy, that means we’re being serious about Black lives, period,” Cruz concluded.

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  • It started as a one-time volunteer opportunity. 50,000 meals later, one volunteer is still making a difference | CNN

    It started as a one-time volunteer opportunity. 50,000 meals later, one volunteer is still making a difference | CNN

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    CNN
     — 

    ‘Tis the season for spreading cheer and joy, two holiday ingredients Lavon Lacey likes to deliver year-round. For the past 26 years, Lacey has volunteered with Open Hand Atlanta, a nonprofit delivering nutritious and healthy meals to Georgia’s chronically ill, disabled and homebound citizens.

    On his recent delivery rounds, Lacey was greeted at most of the apartment buildings like he lives there. That’s typical; he’s been delivering to some of these places for over 20 years. After exchanging pleasantries with various building employees who have became friendly acquaintances, Lacey continued his journey with a box of prepared meals tucked under his arm.

    It ended with a knock on one of the apartment doors, “Open Hand, I have your food.”

    His routes usually consist of 10 to 12 different stops around town. Some of the people he visits are new, some he’s been delivering to for years. On this particular route, one gentleman uses a wheelchair, so Lacey offered to bring the boxes of meals inside for him.

    “There are circumstances where they are too old to handle a box, so I take it in for them and put it in their kitchen. But usually, we hand it to them at the door.”

    It may seem like a small gesture, but for the people he’s helping, it makes a big difference. And all these small gestures add up. Lacey estimates he’s delivered over 50,000 meals to around 7,500 people and he’s done it all for just one organization – Open Hand Atlanta.

    “Open Hand Atlanta brings more than just food, it brings nutritious food to people who may not otherwise get to eat.”

    Open Hand got started in Atlanta in 1988 when a group of friends began cooking meals for people in their community with HIV/AIDS.

    Lacey got involved in the mid ’90s when the theater group he was working with decided to volunteer for a community service project.

    “We came and packed meals and I went, ‘I like this organization. I think I’ll start delivering meals.’”

    Once he began delivering meals, however, he felt compelled to continue after seeing the dire needs of those being served. He would revisit homes frequently, making friends along the way which made the work more personal, but sometimes heartbreaking.

    “Back when I first started, most of the clients had HIV/AIDS. You developed relationships with people as you delivered the meals,” Lacey said. “You got used to their names and saying hello and making their days a little brighter. Then suddenly their name would not be on the list anymore. You’d know at that point they’d either passed away or moved to a different level of care. That was hard to get accustomed to.”

    Over the years, the Open Hand clientele has changed. Seniors now make up a large portion. Open Hand Atlanta also delivers meals to families, those with disabilities or illness and any “at-risk individuals from all walks of life,” according to the organization.

    And demand is growing. In 2021, Open Hand Atlanta cooked and served around 1.5 million meals and now prepares and delivers an estimated 5,000 meals a day. It’s one of the largest community-based providers of home-delivered meals in the US and relies on staff and volunteers to package and deliver meals throughout the state of Georgia.

    With his 27th year coming up next summer, Lacey doesn’t see himself stopping anytime soon and says he’ll probably do it until he “can’t walk anymore.”

    “Volunteerism was just something I grew up with.”

    Lacey says volunteering broadens his horizons and makes him feel healthier and happier. He hopes his story will inspire others to volunteer, especially during the holiday season.

    “What better time to find an organization that you’re passionate about and volunteer your time. And then maybe you’ll just keep doing it through the New Year…or 26 years.”

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  • Opinion: I have a disability that is obvious — and one that’s not | CNN

    Opinion: I have a disability that is obvious — and one that’s not | CNN

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    Editor’s Note: Ben Mattlin, a Los Angeles-based writer born with spinal muscular atrophy, is the author of several books about disability. His latest, called “Disability Pride,” will be out in November from Beacon Press. The views expressed in this commentary are his own. View more opinion on CNN.



    CNN
     — 

    My wheelchair hides my worst disability.

    Most people probably think that having spinal muscular atrophy — a neuromuscular weakness I’ve had since birth — is the nastiest thing that ever happened to me. It isn’t. It isn’t even my most irritating, aggravating or vexingly incurable medical problem.

    That dubious honor goes to … ulcerative colitis (UC).

    My UC is more or less well-managed, thanks to a lot of effort. But its symptoms are maddeningly erratic and unpredictable. It’s considered an autoimmune disease, a still-evolving classification thought to include lupus, rheumatoid arthritis, multiple sclerosis, celiac disease, Graves’ disease, Lyme disease and many more, according to Meghan O’Rourke’s “The Invisible Kingdom.” These and other chronic illnesses disrupt the lives of nearly 200 million Americans, according to the Centers for Disease Control and Prevention — not including another 16 million with long Covid, according to the Brookings Institution.

    Such disorders are often considered “invisible” because they’re not apparent to onlookers. But that doesn’t mean they don’t hurt and don’t impact people daily. That’s why, in 2014, the Invisible Disabilities Association designated the third week of October as Invisible Disabilities Week, to help raise awareness and build support for those of us who are coping with complex chronic diseases.

    Frankly, when you also have the opposite sort of debility — one that’s highly visible, as I do — it’s easy to forget about or at least minimize other infirmities. That is, until an awful flareup reminds you.

    A lot of disabled people like me have multiple conditions, some of which may go undiagnosed. The CDC estimates that more than 38% of disabled American adults are also obese, 16% also have diabetes and 12% also have heart disease.

    Many people, even including many in the disability rights movement, often overlook less visible disabilities, including mental illnesses. But they’re just as important — and as stigmatizing.

    In fairness, I’ve been complicit in keeping my less obvious malady under wraps. Despite publishing several books and essays about almost every embarrassing detail of my life as a proud disabled person — someone who has learned to love his emaciated arms and legs and crooked spine — I’ve unwittingly neglected to divulge the full extent of my ongoing battle with gut inflammation.

    The reasons for this deception seem obvious: First, it’s embarrassing and, second, it’s no one’s business. But perhaps in acknowledging the beast, I can hereby soften its fangs.

    After all, ulcerative colitis and other inflammatory bowel ailments such as Crohn’s disease are nothing to be ashamed of. Like all autoimmune diseases, they can be treated but not cured. Doctors offer a number of therapies, including aminosalicylates (pills, suppositories or enemas), antibiotics and steroids. Perhaps the most effective treatments are immunosuppressants, which lower your ability to fight infections, something I really don’t want in the age of Covid.

    Surgery only helped me to a degree. Years ago, after a life-threatening colitis-related Clostridioides difficile infection, I had my colon removed. Ever since, I’ve sported a colostomy pouch under my clothes. The little bit of my rectum the surgeon left can still become inflamed, however, and leak odorless mucus that intermittently stains my pants. I have no control over it. Flareups can be excruciatingly painful, too, like a bad cramp that presses against the bladder. And yes, accidents do occur every now and then.

    But usually, the only outward sign is a frown on my face, and maybe my grumpy mood. The fact that I’m always sitting helps. No one knows if my pants are soiled. But if I ever have to get out of my chair — at, say, the dentist or to board an airplane — I panic. I envision dying of shame.

    In online forums you read about various pseudoscientific remedies — raw kombucha, aloe vera jelly, even belly exercises. Believe me, I’ve tried many of them. But I have doubts about advice from strangers. Which may be another reason I’ve kept my intestinal affliction on the down-low. I don’t want to attract hucksters.

    A more honest explanation is that very little of my life is private, so I’ve been protective of the few secrets I have. Anyone who sees me instantly knows a number of big and personal facts about me. For instance, not only can’t I walk, but I clearly need help with all manner of daily activities. Wrongheaded assumptions are common, too, of course — such as, that I can’t make up my own mind at restaurants. But even if I can’t pretend that walking is an option, I can make believe my bowels are fine.

    Make no mistake: My spinal muscular atrophy impacts my whole life. But that’s not all there is to me. And when it comes to what can most upend my day and my sense of well-being, there’s no contest. Ulcerative colitis is far more intrusive because it sneaks up on me, and nobody understands when I suddenly wince for no apparent cause.

    I only wish more people realized that disabilities come in all types — even if you can’t tell by looking. Learning about invisible disabilities is an important first step in creating a better understanding and, ultimately, building a more inclusive society.

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