When Lucille Atlookan found out her kidneys were failing, she never expected to find a transplant match so quickly, let alone from her partner.
The 2-Spirit Anishinaabe artist was diagnosed with lupus in 2013. The incurable autoimmune disease causes inflammation in the tissues and organs, resulting in chronic pain. In Atlookan’s case, the 34-year-old’s symptoms include rheumatoid arthritis and kidney dysfunction.
Her kidney transplant, scheduled for Jan. 18, will bring her from Thunder Bay, Ont., to Toronto. It will change her life, and that of her partner, Andrew Woods.
Atlookan is from Eabametoong First Nation, a remote Ojibway community also known as Fort Hope. It’s about 360 kilometres north of Thunder Bay, where she lives and receives dialysis treatment three times a week at the hospital. Each session takes four hours.
“It’s really tiring. I can tell that my skin is changing, looking more dull, bags under my eyes,” Atlookan said. “The colour of my eyes, too, around the whites is starting to change.”
About 1,000 people in Ontario are currently waiting for an organ transplant, with a significant portion needing kidneys, said Craig Lindsay of the Kidney Foundation of Canada. According to the Trillium Gift of Life Network, nearly 800 kidney transplants were done in 2023. Most involved deceased donors.
Thunder Bay artist with lupus prepares for kidney transplant
After a year of receiving dialysis treatment, Lucille Atlookan is receiving a present from her partner he may never be able to top: a kidney transplant. Here’s the story of the Thunder Bay, Ont., couple as they prepare for surgery in Toronto.
Since three members of Atlookan’s immediate family are diabetic, they cannot be organ donors, and her other siblings are too young.
Siblings have about a 25 per cent chance of being an exact match for a living donor, so when Woods was tested and found out he could donate his kidney to Atlookan, he took it as a sign that he was making the right decision.
“What reason is there not to?” Woods said. “I mean, it’s relatively safe. It’s probably about as safe as driving to work every day for me to donate.”
‘A scary journey’
Lindsay, director of programs and public policy with the foundation’s Ontario branch, has been living with a kidney transplant for nearly a decade.
Depending on a person’s tissue type, the wait for an organ from a deceased donor may be two to six years. However, the wait-for a living donor could be under a year, and typically the organ would be in better condition and last longer, Lindsay said. Oftentimes, people go off the wait-list because they become too sick for the surgery.
The kidney foundation aims to make it easier for patients and their families to navigate the health-care system by providing education, peer support, financial assistance and advocacy.
“We sit outside of the health-care system, but we fill a lot of the gaps for people,” Lindsay said. “A good part of what we do is help them understand what’s happening, what’s next and how to prepare for it.”
There are only five organ transplant centres in the province — in Hamilton, Toronto, London, Kingston and Ottawa.
“I’m very well aware that if your kidneys fail in Thunder Bay, you’re looking at a scary journey,” Lindsay said.
People must also pay to be away from home for an extended period. Funding resources, like the Northern Health Travel Grant, are available, “but my sense is they’re not enough.”
“We still hear people choosing to either take their medication or buy groceries by the end of the month,” Lindsay said.
He wants more done to empower patients to be active participants in their own care. Having access to electronic health records, for example, is a big step forward, as well as virtual care when possible to avoid travel costs.
Calls for more support
Atlookan said her late grandmother received dialysis treatment for about five years.
“She looked different after that whole treatment – and she got really sick. She had to move here from Fort Hope, away from her family, away from the land that she knew.”
While Atlookan was already living in Thunder Bay when she started dialysis, it has been isolating. People often don’t believe she is sick or needs a disability parking permit because she appears healthy, she explained.
Atlookan, a 2-Spirit Anishinaabe artist from Eabametoong First Nation who now lives in Thunder Bay, is shown completing a beaded piece for her father. Atlookan was diagnosed with lupus, an autoimmune disease, in 2013. (Sarah Law/CBC)
She would like to see more peer support in northern Ontario for people with chronic kidney disease.
“What I’ve noticed when I go to groups is that I’m the most visible brown person there, the youngest there, too, and it’s kind of hard to connect with people.”
Advocacy as healing
Abbey Hunter was 16 when she was diagnosed with lupus. Now 21 and finishing her final year of political science at Lakehead University, the Thunder Bay resident remembers being a “mystery” to doctors.
In May 2018, she was airlifted to London, Ont. Doctors discovered more than 750 millilitres of fluid around her heart, and after weeks of tests, the lupus diagnosis gave her a sense of validation. She travels to Toronto for care every three months, which includes seeing a rheumatologist.
“Especially as a young person, I felt very alone and ignored for a long time because I began to feel like it was all in my head, right?” Hunter said.
More than one in 1,000 Canadians are affected by lupus, according to Lupus Canada. Hunter said it’s often called the “disease with 1,000 faces” because it impacts people so differently.
The first Walk for Lupus in Thunder Bay was organized by Vanessa Cava and Abbey Hunter. It drew over 200 participants and raised over $21,000 this summer. (Submitted by Abbey Hunter)
“That’s often why lupus patients feel very alone,” she said. “It’s hard when you live in the north, especially living with lupus. We have no resources here for a lot of autoimmune diseases.”
For example, Thunder Bay only has one permanent rheumatologist, while the Ontario Rheumatology Association said the city needs at least three, Hunter said.
She has received a lot of support from her family, and through advocacy. She is a patient family adviser at Thunder Bay’s hospital, is involved with Lupus Ontario, and sits on the Noojmawing Sookatagaing Thunder Bay District Ontario Health Team People-Centred Advisory Council.
Last summer, she and her friend, Vanessa Cava, organized the city’s first Walk for Lupus and raised more than $21,000 to support the Advanced Clinician Practitioner in Arthritis Care Program as part of efforts to bring more specialists to northern Ontario.
Hunter plans to complete a master’s program in public health and wants to push for a more digitized, holistic and people-centred health-care system to better support people with chronic diseases.
Need for more donors
Atlookan is both nervous and excited for her upcoming kidney transplant at Toronto General Hospital. After her four- to eight-week recovery period, she’ll be able to work full time.
She has dreams of travelling to New Zealand and visiting Hobbit houses, showering without a chest catheter and having fewer dietary restrictions.
“I look forward to eating a banana.”
While about 80 per cent of Canadians support organ donation, only a third are registered donors, Lindsay said. He encourages people to register at beadonor.ca.
“Consider it because you’re going to save somebody’s life, or at least prolong it, and with very little risk to yourself,” Woods said.
“I think it’s probably one of the best things that people can do.”
MILWAUKEE (AP) — Whooping cough is at its highest level in a decade for this time of year, U.S. health officials reported Thursday.
There have been 18,506 cases of whooping cough reported so far, the Centers for Disease Control and Prevention said. That’s the most at this point in the year since 2014, when cases topped 21,800.
The increase is not unexpected — whooping cough peaks every three to five years, health experts said. And the numbers indicate a return to levels before the coronavirus pandemic, when whooping cough and other contagious illnesses plummeted.
Still, the tally has some state health officials concerned, including those in Wisconsin, where there have been about 1,000 cases so far this year, compared to a total of 51 last year.
Nationwide, CDC has reported that kindergarten vaccination rates dipped last year and vaccine exemptions are at an all-time high. Thursday, it released state figures, showing that about 86% of kindergartners in Wisconsin got the whooping cough vaccine, compared to more than 92% nationally.
Whooping cough, also called pertussis, usually starts out like a cold, with a runny nose and other common symptoms, before turning into a prolonged cough. It is treated with antibiotics. Whooping cough used to be very common until a vaccine was introduced in the 1950s, which is now part of routine childhood vaccinations. It is in a shot along with tetanus and diphtheria vaccines. The combo shot is recommended for adults every 10 years.
“They used to call it the 100-day cough because it literally lasts for 100 days,” said Joyce Knestrick, a family nurse practitioner in Wheeling, West Virginia.
Whooping cough is usually seen mostly in infants and young children, who can develop serious complications. That’s why the vaccine is recommended during pregnancy, to pass along protection to the newborn, and for those who spend a lot of time with infants.
But public health workers say outbreaks this year are hitting older kids and teens. In Pennsylvania, most outbreaks have been in middle school, high school and college settings, an official said. Nearly all the cases in Douglas County, Nebraska, are schoolkids and teens, said Justin Frederick, deputy director of the health department.
That includes his own teenage daughter.
“It’s a horrible disease. She still wakes up — after being treated with her antibiotics — in a panic because she’s coughing so much she can’t breathe,” he said.
It’s important to get tested and treated with antibiotics early, said Dr. Kris Bryant, who specializes in pediatric infectious diseases at Norton Children’s in Louisville, Kentucky. People exposed to the bacteria can also take antibiotics to stop the spread.
“Pertussis is worth preventing,” Bryant said. “The good news is that we have safe and effective vaccines.”
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AP data journalist Kasturi Pananjady contributed to this report.
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The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
How a sperm and egg fuse together has long been a mystery.
New research by scientists in Austria provides tantalizing clues, showing fertilization works like a lock and key across the animal kingdom, from fish to people.
“We discovered this mechanism that’s really fundamental across all vertebrates as far as we can tell,” said co-author Andrea Pauli at the Research Institute of Molecular Pathology in Vienna.
The team found that three proteins on the sperm join to form a sort of key that unlocks the egg, allowing the sperm to attach. Their findings, drawn from studies in zebrafish, mice, and human cells, show how this process has persisted over millions of years of evolution. Results were published Thursday in the journal Cell.
Scientists had previously known about two proteins, one on the surface of the sperm and another on the egg’s membrane. Working with international collaborators, Pauli’s lab used Google DeepMind’s artificial intelligence tool AlphaFold — whose developers were awarded a Nobel Prize earlier this month — to help them identify a new protein that allows the first molecular connection between sperm and egg. They also demonstrated how it functions in living things.
It wasn’t previously known how the proteins “worked together as a team in order to allow sperm and egg to recognize each other,” Pauli said.
Scientists still don’t know how the sperm actually gets inside the egg after it attaches and hope to delve into that next.
Eventually, Pauli said, such work could help other scientists understand infertility better or develop new birth control methods.
The work provides targets for the development of male contraceptives in particular, said David Greenstein, a genetics and cell biology expert at the University of Minnesota who was not involved in the study.
The latest study “also underscores the importance of this year’s Nobel Prize in chemistry,” he said in an email.
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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.
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