A gift of life and love: Thunder Bay artist with lupus prepares for transplant of partner's kidney | Canada News Media
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A gift of life and love: Thunder Bay artist with lupus prepares for transplant of partner’s kidney

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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.”

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Here is how to prepare your online accounts for when you die

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LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?

It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.

Here’s how you can prepare your digital life for your survivors:

Apple

The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.

For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.

You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.

Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.

Google

Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.

When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.

You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.

There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.

Facebook and Instagram

Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.

When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.

The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.

You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.

TikTok

The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.

Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.

X

It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.

Passwords

Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?

Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.

But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.

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Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.

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Pediatric group says doctors should regularly screen kids for reading difficulties

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The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.

New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.

The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.

Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.

Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.

“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.

“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”

McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.

But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.

The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.

He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.

“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.

“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.

McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”

McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.

He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.

“Early identification of reading difficulty can truly change the trajectory of a child’s life.”

This report by The Canadian Press was first published Oct. 23, 2024.

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UK regulator approves second Alzheimer’s drug in months but government won’t pay for it

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LONDON (AP) — Britain’s drug regulator approved the Alzheimer’s drug Kisunla on Wednesday, but the government won’t be paying for it after an independent watchdog agency said the treatment isn’t worth the cost to taxpayers.

It is the second Alzheimer’s drug to receive such a mixed reception within months. In August, the U.K. regulator authorized Leqembi while the same watchdog agency issued draft guidance recommending against its purchase for the National Health Service.

In a statement on Wednesday, Britain’s Medicines and Healthcare regulatory Agency said Kisunla “showed some evidence of efficacy in slowing (Alzheimer’s) progression” and approved its use to treat people in the early stages of the brain-robbing disease. Kisunla, also known as donanemab, works by removing a sticky protein from the brain believed to cause Alzheimer’s disease.

Meanwhile, the National Institute for Health and Care Excellence, or NICE, said more evidence was needed to prove Kisunla’s worth — the drug’s maker, Eli Lilly, says a year’s worth of treatment is $32,000. The U.S. Food and Drug Administration authorized Kisunla in July. The roll-out of its competitor drug Leqembi has been slowed in the U.S. by spotty insurance coverage, logistical hurdles and financial worries.

NICE said that the cost of administering Kisunla, which requires regular intravenous infusions and rigorous monitoring for potentially severe side effects including brain swelling or bleeding, “means it cannot currently be considered good value for the taxpayer.”

Experts at NICE said they “recognized the importance of new treatment options” for Alzheimer’s and asked Eli Lilly and the National Health Service “to provide additional information to address areas of uncertainty in the evidence.”

Under Britain’s health care system, most people receive free health care paid for by the government, but they could get Kisunla if they were to pay for it privately.

“People living with dementia and their loved ones will undoubtedly be disappointed by the decision not to fund this new treatment,” said Tara Spires-Jones, director of the Centre for Discovery Brain Sciences at the University of Edinburgh. “The good news that new treatments can slow disease even a small amount is helpful,” she said in a statement, adding that new research would ultimately bring safer and more effective treatments.

Fiona Carragher, chief policy and research officer at the Alzheimer’s Society, said the decision by NICE was “disheartening,” but noted there were about 20 Alzheimer’s drugs being tested in advanced studies, predicting that more drugs would be submitted for approval within years.

“In other diseases like cancer, treatments have become more effective, safer and cheaper over time,” she said. “ We hope to see similar progress in dementia.”

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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.

The Canadian Press. All rights reserved.

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