Congestive heart failure life expectancy: Prognosis and stages
Living With Lupus After 'accidental' Diagnosis
ROBINSON... People always say I do not look sick, and people tend to not have so much patience when you do not look sick (Photo: Garfield Robinson)
ONE year after being diagnosed with lupus at 21 and initially fearing that it meant an early end to her life, 'lupus warrior' Shenae Robinson is living every day with a smile on her face, despite the pain she suffers due to the chronic illness.
"Having lupus is an experience in patience and it is an experience of loving my body when it really hates me. Lupus is like when your body decides you are not going to have a good day today, and it's about learning to manage that and learning to be patient with yourself and understanding your limitations, and also understanding that this is not the end of your life and this is not a defining characteristic of you," the 22-year-old said.
According to the National Health Fund (NHF), lupus is a long-term disease that causes the body's immune system — which normally helps protect the body from infection and disease — to attack healthy cells. This attack causes inflammation, and in some cases permanent tissue damage, which can be widespread — affecting the skin, joints, heart, lung, kidneys, circulating blood cells, and brain. It affects multiple organs in the body and can be quite painful.
It is difficult to diagnose, may range from mild to severe and has no known cause, NHF said.
Detailing her struggles in a testimonial at the Lupus Foundation of Jamaica Awareness Month launch last Wednesday, she said although she was not diagnosed until last year, her mother suspected she had the autoimmune disease from as early as 13 years old due to the physical challenges with which she struggled.
"How I finally found out I had lupus was an accident. The doctor thought I already knew, and she was recommending a lupus treatment for me…but to her and also my surprise, it was the first time I was [being] diagnosed with lupus despite all the challenges over the years. Even the summer before I was diagnosed, I was taking painkillers basically to have a shower, and my mom was very concerned," Robinson said.
Robinson told the Jamaica Observer that when she was diagnosed with systemic lupus erythematosus, doctors contemplated hospitalisation.
"So when we ended up getting tested for ANA [antinuclear antibodies], it was so bad that they put me on 36 milligrams of steroids, which anyone who has lupus would know that amount is insane because even the pharmacist asked me if I was sure that was how much. They almost hospitalised me, but they decided to just put me on the steroids and send me home to figure out if I would need more treatment or if I would need basically lupus' version of chemotherapy, which would be some steroid therapy," she recounted.
However, despite what she has had to endure physically, the young woman said the hardest part of her journey is people's lack of patience due to their limited knowledge of lupus and how it can affect the body.
"People always say I do not look sick, and people tend to not have so much patience when you do not look sick," she told the Sunday Observer. "But even though I may not look sick, I have to explain that despite looking fabulous, I am feeling pain in my entire body and I am literally about to pass out…"
As she navigates each day and learns how to be patient with her body, Robinson admits that she is worried about her future.
"Being 22 with lupus, it's a bit easier to be happy despite the challenges. However, I imagine [that] when I am 50 and the arthritis gets worse, it will not be as funny. So it's been a process to navigate that. Now, too, you are starting meaningful relationships and you have to warn the person from the start about the illness and to consider if I will even be able to have children and how the challenges will affect the entire process, so going through the rest of my life is going to teach me so much more patience," she explained.
However, regaining her smile, Robinson said she usually uses humour to cope with the pain.
"I joke about it constantly, and it's about having friends that understand those jokes because it can get a little bit dark, so that definitely helps, and having a super tight support system. My sister is always saying if I need a kidney I should let her know and I might actually need one, so I try to keep a close relationship with my siblings just in case I might need their kidneys in the future," she said.
Robinson expressed gratitude to the Lupus Foundation of Jamaica for their support. She is working with the team to raise awareness about the autoimmune disease among the younger population.
The disease is found to be more common among females ages 15 to 44, NHF said.
In the meantime, president of the Lupus Foundation of Jamaica Dr Desiree Tulloch-Reid is urging more Jamaicans to get onboard with the fight against lupus.
"This year's theme, 'Empowering lives, inspiring hope', reminds us of the onward work that needs to be done. And we made great progress, but there are still too many Jamaicans affected by lupus who face daily battles — battles with their health…with their finances and the societal stigma — so use this month to amplify your voices and to advocate for one another," she encouraged.
Approximately, 6,000 Jamaicans are currently living with lupus, with around five million people worldwide affected by the chronic illness.
More Than 10,000 Students In Philadelphia Don't Have Adequate Housing. Funding And Stigma Can Get In The Way Of Them Getting What They Need
Before her mother died in 2020 at age 46 of heart failure, complicated by diabetes, lupus and lung disease, Lelache Word (aka Lela), then 15, was living in Arizona with her mother, stepfather and step-siblings. Strapped by her mother's staggering medical bills, the family sometimes slept in the car or hotels.
After her mother's death, Word moved to her birth father's home in Philadelphia to attend high school. What happened there sank her hopes. "My father drank heavily and was abusive," says Word. "I would run away from home, stay with a friend, and at rare times, in a shelter. People steal there."
Word became one of 40,003 Pennsylvania students experiencing homelessness, the number cited in a 2023 report published by the Pennsylvania Department of Education.
About one fourth of Pennsylvania's public school students experiencing homelessness in the 2022-2023 school year lived in Philadelphia, with more than 10,000 with inadequate housing in the School District of Philadelphia, according to the district's Education for Children & Youth Experiencing Homelessness (ECYEH), in the Office of Student Rights and Responsibilities. The number is likely below the actual total, according to ECYEH, which works to reduce or eliminate educational barriers to students experiencing homelessness.
Like Word, the majority of Pennsylvania young people living in inadequate housing are students of color, reports the Education Law Center (ELC). "Due to centuries of systemic racism and other pervasive forms of discrimination in housing … people of color in our country and [state] … are often prevented from accessing permanent, stable and adequate housing," says ELC's 2023 legal analysis on the rights of students experiencing homelessness.
The McKinney-Vento Homeless Assistance Act, passed by Congress in 1987, provides help for students experiencing homelessness, but school districts often struggle to identify these students. The situation can mean that students without stable housing continue living exposed to physical danger and without basic needs like healthcare. Several Philadelphia groups have stepped in to offer help.
Generated by AI. The School District of Philadelphia follows the McKinney-Vento definition of homelessness, which includes living in hotels, motels, campgrounds, cars, trailer parks and public spaces such as train stations. Couch-surfing in friends' homes or "doubling up" with relatives — the most common situation — also counts.
Each school assigns a McKinney-Vento liaison — often a school counselor, administrator or social worker — responsible for identifying young people experiencing homelessness and ensuring that McKinney-Vento requirements are met. Teachers may be the first to notice signs, such as many absences and frequently missing homework, that could mean a lack of stable housing, says Villanova University associate professor of education and counseling Stacey Havlik, a former middle school counselor who sometimes had contact with students experiencing homelessness.
Once found eligible under McKinney-Vento, students can receive enrollment assistance, uniforms and supplies, transportation support, emergency funds, clothing, academic and emotional-support services and other resources, says ECYEH.
Identifying McKinney-Vento eligible students is a school's legal responsibility, but it can be a tough task. ELC staff attorney Paige Joki says it's the chief roadblock to an education for students experiencing homelessness. "Many schools don't use a universalized survey to determine if a student is McKinney-Vento eligible," she says. "Also, when the student's status is in dispute, that student should be treated as McKinney-Vento eligible until the dispute is resolved, including exhausting all appeals." That doesn't always happen, Joki says, meaning many students are deprived of education, resources and, possibly, the only stable place in the child's life.
To further complicate matters, children's parents and guardians may hide their housing status for fear that they will be reported to a child welfare agency, Havlik says. If they're living with relatives due to loss of housing, they may not consider themselves homeless and remain unaware of potential support. For example, if their child needs glasses or hearing aids, the family could miss out on that assistance.
Some young people experiencing homelessness are entirely alone. "A … girl was kicked out of her home due to a conflict," says Alyssa Weinfurtner, MSW, director of emergency services for Philadelphia at Valley Youth House. "She went from relative to relative, then found us," Weinfurtner says.
In other cases, families throw out LGBTQ+ young people because of their sexuality or gender identity, according to The Trevor Project, a nonprofit focused on preventing the suicide of LGBTQ+ youth. These young people have "two to four times the risk of reporting depression, anxiety, self-harm, considering suicide and attempting it, compared with their peers with stable housing," the organization's February 2022 report says.
— Melissa Tsuei, Thrive ProjectStigma often complicates matters too, says Melissa Tsuei, manager of the Thrive Project, a program of HopePHL, a nonprofit that offers housing, advocacy and trauma-informed social services to children, youth and families. Thrive works with the school district and provides housing for unhoused students. "Students are deeply reluctant to say that they're experiencing homelessness," Tsuei says. It's not cool to be a homeless teen, as one teacher puts it.
"Lela is unusual in being transparent," Tsuei says. That forthrightness helped her. One of Word's friends witnessed her father being abusive to her and understood that Word needed to move in with her immediately. Thrive also assisted Word with information about youth and young adult housing.
Tsuei spoke of the importance of changing the narrative so that the public views homelessness not as a personal failure but as a systems failure — as a lack of support for families — which could reduce the shame and stigma of not having a home. It was Word's family's lack of medical access combined with the housing crisis that left them homeless, Tsuei says. "It is well-documented … that our systems are built for some and not for others."
Once a student is found to be McKinney-Vento eligible, it pays to tackle basics first, Havlik says. "There is a hierarchy of need," she says. "These young people need food, clothing and shelter before they can attend to learning." Another researcher spoke of picturing a homeless preschooler trying to adjust to the newness of a classroom on an empty stomach.
Transportation is another major problem, according to Joki. "Students living doubled up may stay in three different places over the course of the week and require transportation from each place," she says. "Or they may need specialized transportation. A disproportionate number of young people experiencing homelessness has a disability."
McKinney-Vento also provides funds for tutoring, a key provision since young people experiencing homelessness are twice as likely to repeat a grade as compared to their adequately housed counterparts, says the National Child Traumatic Stress Network (NCTSN). "More than one-fifth of homeless preschoolers have emotional problems serious enough to require professional care, but less than one-third [of those who need it] receive any treatment," NCTSN's 2005 report says.
Word's mother seems to have been perceptive in that respect. "My mother always made sure that we got [psychological] counseling," Word says. In addition, Thrive referred Word to programs to support her physical and emotional health.
ELC's Joki says that the McKinney-Vento Act requires that schools treat inadequately housed children with sensitivity — for example, guarding their privacy — but some schools go a step further, pairing students with teachers with whom they've formed a bond.
Word praised the behavioral health counselor at Strawberry Mansion High School. "Mr. Pedersen helped me pull myself together," she says. "I was able to finish because of all of the teachers who supported me. Mrs. Pedersen [in Emotional Support] helped me too. I could go in her room and nap when I needed to." Thrive staff members met regularly with the Pedersens, who are married, to discuss how best to help Word graduate on time.
Schools could also help by eliminating fees for things like replacing an ID or fines for not having a hall pass. "Sometimes students are penalized for having a cell phone when it's the only way they can stay in touch with their family," Joki says. "You want to remove barriers to students' crossing the finish line."
A cash crunch may limit McKinney-Vento's effectiveness, some researchers believe. The funding stands at about $500,000 this year. "Some say that McKinney-Vento is aspirational in nature because there is not enough money to provide the services it calls for," Havlik says.
In the past, the City has given low priority to helping children experiencing homelessness, says David Fair, executive director of Turning Points for Children, a nonprofit that serves vulnerable families. "Children and youth were an afterthought in the shelter system," he says.
That situation may change, thanks to the hearing on homeless students in the school district convened on July 31, 2024 by City Councilmember-at-large Isaiah Thomas, chair of the Education Committee. "There's … uncertainty with federal dollars running out," he says, emphasizing that the city should develop a plan to aid children and youth experiencing homelessness, whose numbers could rise with the housing crisis. He promised more meetings on the topic and possible legislation.
Valley Youth House's Weinfurtner spoke of large service gaps that could come about with federal funds provided during the COVID-19 pandemic about to expire. "We need to look at what other cities have done," she says. "If a young person doesn't finish high school, they're four times as likely to experience homelessness in the future."
Support can turn around the lives of unhoused young people, Havlik says. Students experiencing homelessness have the potential to be extremely successful, she says. "They are some of the most resilient students in the school system," she says. "They get up, get to school and do their homework despite everything. It's our job to remove barriers so that they can attend and be successful in school."
Word's plans seem to bear her out. "I want to attend college for psychology, then I want to get a beautician's license," she says. "People could come in [my shop] and get counseling and get their hair done. It's to honor my mother. She always did her makeup, she was always glowing."
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Tea And Coffee Could Actually Be Good For Your Heart, Study Reveals
Study suggest caffeine - present in coffee, tea, and cocoa - helps endothelial progenitor cells which regenerate the lining of blood vessels
Small study indicates health benefits of a cuppa (Image: Getty Images)
Drinking tea and coffee could be good for the heart, research suggests.
Scientists have identified how caffeine could boost health in people suffering with problems with the immune system. Tests on study participants with the condition lupus found those who consumed caffeine had better heart health, measured by analysing the state of key endothelial cells.
The study suggest that caffeine - present in coffee, tea, and cocoa - could activel help endothelial progenitor cells. These are the group of cells that helps regenerate the lining of blood vessels and help protect against stroke and heart attack. They are also important for healthy wound healing.
Previous research has indicated caffeine can boost health in some ways but too much can be harmful (Image:
Getty Images)Study leader Dr Fulvia Ceccarelli said: "Besides the well-known stimulant effect on the body, caffeine also exerts an anti-inflammatory effect because it binds with the receptors expressed on the surface of immune cells. The effect of caffeine consumption on cardiovascular health has been widely investigated, with conflicting results."
Previous research has indicated caffeine can boost health in some ways but too much can be harmful. Also adding sugar and milk to tea and coffee could counteract any benefits. However the research team wanted to investigate exactly how caffeine could be having beneficial effects. Scientists from Sapienza University of Rome enrolled 31 lupus patients who completed a seven-day food questionnaire before giving samples of blood for analysis.
Lupus occurs when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues. Patients with such autoimmune conditions, which also include arthritis, are at higher risk of vascular disease, heart attack and stroke because of this damage to blood vessels.
Caffeine could have beneficial health effects but in moderation (Image:
Getty Images)The study, published in the journal Rheumatology, found that patients who consumed caffeine had better vascular health, as measured through protective endothelial cells, which form the important inner layer of blood vessels. Dr Ceccarelli said: "The present study is an attempt to provide patients with information on the possible role of diet in controlling the disease. It will be necessary to confirm the results through a longitudinal study, aimed at assessing the real impact of coffee consumption on the disease course."
Lupus causes inflammation, and in some cases permanent tissue damage, which can affect the skin, joints, heart, lung, kidneys, circulating blood cells, and brain. Symptoms can include fatigue, skin rashes, joint pain, headaches, swollen glands, depression as well as hair and weight loss.
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