Georgia Lefas had been feeling exhausted for more than year.
The mornings were especially hard. It was taking Lefas, an obstetrician-gynecologist, longer to recover from her nighttime call-outs to deliver babies. The marathon runner found herself taking 20 minutes to get up and moving in the morning, something she wasn’t used to.
The fatigue was overwhelming, but Lefas, 40, powered through. Being tired was part and parcel of her busy life as a medical professional and family caregiver.
Georgia Lefas was training for the Chicago Marathon last year when she was officially diagnosed with lupus. (Supplied)
Then mysterious things began happening to her body.
“I developed severe Raynaud’s (a phenomenon that causes decreased blood flow to the extremities) on my hands and feet. They would go numb then turn white, then red, then purple. It would start with one finger before progressing to all fingers, and then one toe before all the toes,” she says.
“And then I started to develop sun rashes, which was very strange.”
Lefas was convinced there was something wrong with her thyroid. She went to see her personal physician, who listened to her list all her symptoms before suggesting blood work, which threw up abnormal results.
“I was referred to a rheumatologist who felt that lupus was the autoimmune disease which fitted my symptoms and blood work results. My mom has lupus, so it was in the back of my mind, but there was an element of denial as well,” she says.
“I had always been so healthy that I was kind of hoping it would skip me.”
Lefas received her diagnosis in August 2023 when she was training for the Chicago Marathon in October, which she was able to successfully complete with the reassurance of her support group and rheumatologist.
She is currently training for the 2024 New York Marathon in November to raise funds for the Lupus Research Alliance, working with a coach who understands the limitations of her body and tweaks her training plan to accommodate her lupus flare-ups.
Because of her illness, Lefas has made changes to her diet, limiting dairy and gluten in order to lessen inflammation. She scaled back the number of hours she works to ease feelings of fatigue and is on daily medication.
“I am accepting of what my reality is. Looking back, I can see I put the blinders on and powered ahead. Having lupus is weird; it really does affect you but it is also validating in a way because there is actually something going on. This fatigue wasn’t just in my head,” she says.
“It’s also scary, because what does this mean for my future? There is the duality of feeling validated and also being fearful of what might come.”
Since being diagnosed with lupus, Krizan Alabado’s active social life has ground to a halt. (Mikaela MacKenzie / Free Press)
Lupus is often referred to as the disease of a thousand faces, owing to its wide-ranging symptoms, the most common being extreme fatigue, joint and muscle pain, and Malar rash, also known as a butterfly rash, which is triggered by the sun and appears over the nose and cheeks.
The chronic autoimmune disease causes the immune system to mistakenly attack the body’s own healthy tissue and organs, resulting in inflammation.
Inflammation can affect the skin, joints, muscles, lungs and kidneys, causing damage to those areas. As lupus can affect any part of the body, symptoms vary widely from person to person and range from mild to severe.
The more severe forms of the disease involve the kidney and can lead to kidney failure.
Diagnosis is complicated, as symptoms can mimic other illness such as fibromyalgia and rheumatoid arthritis. And with no single diagnostic test for lupus, identifying it can be challenging.
The road to getting a lupus diagnosis can be a long one that involves multiple visits to the doctor for blood and imaging tests, clinical evaluations and ruling out other conditions.
A 2017 study of more than 3,000 adults with lupus by the Lupus Foundation of America revealed 46.5 per cent are misdiagnosed at the start of their journey with the disease.
And more than half (54.1 per cent) were told their symptoms were psychological or there was nothing wrong with them.
According to Lupus Canada, one in 1,000 Canadian women, children and men live with the condition.
Dr. Christine Peschken (Supplied)
“Every description of lupus, every medical paper starts with the sentence, ‘Lupus is very heterogeneous disease,’” says Dr. Christine Peschken, professor of medicine and community health sciences at the Rady Faculty of Health Sciences, head of rheumatology at the University of Manitoba and chair of the Canadian Network for Improved Outcomes in Systematic Lupus Erythematosus.
“It’s a disease that needs a lot of work, attention and expertise. It is not common in the way we think of diabetes or heart disease or osteoarthritis. Often, there is no specific diagnostic test. There is clinical diagnosis, where you put together the symptoms, the physical findings and the tests to come up with the diagnosis,” Peschken says.
“It takes patience … a long time and a lot of things building up to add it into a lupus diagnosis.”
This delay can be dangerous: the longer it takes to identify, the more risk there is of severe outcomes and decreased quality of life. A Danish study showed delayed diagnosis and treatment in 100 lupus patients led to an increased progression to end-stage kidney disease.
While men and children can be diagnosed with lupus, the disease overwhelming affects young women of child-bearing age and is disproportionately found in Black, Asian, Hispanic and Indigenous communities.
“Why that is complicated, in part, (it) probably relates to genes that form an evolutionary perspective to provide advantages in fighting various viruses,” Peschken says.
“What happens to flip those into autoimmunity is fairly complex and isn’t clearly understood.”
Effects of the illness are debilitating, as Krizan Alabado can attest.
Krizan Alabado rarely goes to parties for fear of getting sick, instead she stays home with her dogs Pepper (left) and Gohan. (Mikaela MacKenzie / Free Press)
Alabado’s life has changed since she was diagnosed with lupus in July of last year. The process and administration co-ordinator at IG Wealth Management used to lead an active social life, attending family gatherings and going out for dinner with friends. Since being diagnosed, she finds herself spending more time at home, she says.
“My big fear is getting sick and the illness making my lupus symptoms worse,” the 31-year-old explains. “I still contact my colleagues and friends, but it’s not the same as going out and meeting them face-to-face. COVID took years from my social life, and now this.”
Muscle weakness and loss of strength has affected her mental health.
“I just feel like I am sometimes a burden. Because I am so weak now, I can’t help with lifting anything. My family tell me to be careful; they say, ‘Let your brother do that.’ I feel useless sometimes,” she says.
Alabado recently contracted COVID-19. The virus left her feeling even more fatigued than usual and her dosage of medications was increased to combat heightened inflammation.
“We have to address the emotional burden the chronic nature of the disease can take on someone.”– Leanne Mielczarek
Alabado’s fear of contracting an illness owing to her weakened immune system has left her feeling anxious about her future.
“We have to address the emotional burden the chronic nature of the disease can take on someone,” says Leanne Mielczarek, executive director of Lupus Canada.
“The uncertainty and unpredictability of life after diagnosis can cause people to worry about what the future can look like. It’s not an easy disease to understand because it is an invisible disease. Many times patients look well but they are not; they are struggling.”
While there are no specific mental-health resources available for people who have lupus, Lupus Canada acts as a resource for people to seek help and support.
At lupuscanada.org there are disease-awareness webinars on topics such as dealing with isolation and mental-health challenges.
The uncertainty of life after diagnosis can cause people to worry about their futures, says Leanne Mielczarek, executive director of Lupus Canada. (Supplied)
“We are also very active on all our social media platforms where we share information and stories on coping strategies,” Mielczarek says.
A multifaceted approach with lifestyle changes, trigger avoidance and customized medications all play an important role in effectively managing lupus.
It’s important to steer clear of triggers such as sun exposure that can worsen symptoms.
Avoiding smoking and maintaining healthy behaviours are also key.
Medications are often prescribed based on how lupus is affecting the individual, with treatments tailored to target the specific body parts impacted and severity of symptoms.
“Treatment is primarily directed at immune modulation or suppression. Patients use different treatments throughout their life course, but all immune-suppression treatments have side effects,” Peschken says. “Prednisone, part of a class of glucocorticoids corticosteroids, works well and works fast but it has a ton of side effects over time, which you can’t avoid.”
While no drug is completely side effect-free, targeted biologic therapy is an option when it comes to treating lupus. Belimumab, a human monoclonal antibody sold under the brand name Benlysta, is the first and only biologic therapy approved in Canada for systemic lupus erythematosus (the most common type) and lupus nephritis (a form that specifically affects the kidneys).
“These therapies may provide significant benefit for patients who have not responded well to current options. The idea of targeted therapy is to manipulate specific parts of the immune system without causing as many problems in other areas,” Peschken explains.
Kelly Petryk’s pain was so bad, she struggled to hold her baby son. (Supplied)
Kelly Petryk knows all too well about medications; she’s been taking them daily for 13 years now. The nurse was diagnosed in 2011 when she was seven months post-partum.
“My son was born in May. Initially I was feeling really drained, around six to eight weeks after I had my son, so I went to my doctor and asked him to check my hemoglobin levels. I thought I had low iron,” says Petryk, 43.
On a trip to Newfoundland a few months later in August, Petryk’s toe joints started to hurt. The pain progressed to her ankles, knees and hips. As time went on, she found herself struggling to hold her son. The pain would became worse if she tried to lift him out of his crib or when she was gripping the car seat.
Joint pain combined with rapid weight and hair loss alerted Petryk that something might be terribly wrong. By the end of November that year she found that even lying in bed was uncomfortable, causing pain throughout her whole body.
“I couldn’t move my head from one side of the pillow to the other, it hurt so bad. I couldn’t handle having my feet touch the end of the bed; I would have to prop everything up,” she says.
“I knew something was really wrong with me.”
She went back to the doctor for more tests.
“When the lupus bloodwork came back, all my inflammatory markers were elevated. On Dec. 1, my doctor called me at home and said, ‘You have lupus,’” she says.
“It’s not an easy disease to understand because it is an invisible disease. Many times patients look well but they are not; they are struggling.”– Leanne Mielczarek
Today Petryk takes up to to take 10 pills a day. She is takes daily doses of anti-inflammatory drug Prednisone; anti-rheumatic Hydroxychloroquine; Pariet (which reduces stomach acid); Pregabalin (for neuropathic pain); and anti-inflammatory painkiller Celebrex twice daily.
She also takes regular Tylenol at bedtime; if her pain is particularly bad she will take one Tylenol No. 3 and one Tylenol 500 mg instead.
Her medicine load would be significantly reduced if she were able to afford Benlysta, she says.
“I’ve had Benlysta before; however, the insurance we were using to pay for it, the premiums doubled and we couldn’t afford that. The really terrible part of it is that the med is available, but it costs $20,000 to $30,000 a year,” she says.
“I need one injection once a week, and it’s not covered by medical insurance and it’s not under the provincial formulary either. The Blue Cross doesn’t cover it and neither does the province. Because I work, I have a Pharmacare deductible based on what my income is and right now for me that is between $8,000 to $9,000. What that means is that before the province pays for my meds I have to spend up to $9,000.”
She finds the situation frustrating but focusing on the negatives affects her mental health.
“My kids deserve a happy mom and I deserve to be happy; there’s no sense in letting it affect me,” she says.
Peschken is hopeful for new and more effective treatments in the future. Ongoing research in Canada and Manitoba will aid medical professionals in learning more about best practice to find effective treatment and medications.
“There are a lot of treatments in the pipeline that we hope will be successful. It will give us a lot of options. With earlier diagnosis, better treatment, access to health care, the outcome for lupus patients is pretty good in Canada,” she says.
Skinstitut Holiday Gift Kits take the stress out of gifting
Toronto, October 31, 2024 – Beauty gifts are at the top of holiday wish lists this year, and Laser Clinics Canada, a leader in advanced beauty treatments and skincare, is taking the pressure out of seasonal shopping. Today, Laser Clincs Canada announces the arrival of its 2024 Holiday Gift Kits, courtesy of Skinstitut, the exclusive skincare line of Laser Clinics Group.
In time for the busy shopping season, the limited-edition Holiday Gifts Kits are available in Laser Clinics locations in the GTA and Ottawa. Clinics are conveniently located in popular shopping centers, including Hillcrest Mall, Square One, CF Sherway Gardens, Scarborough Town Centre, Rideau Centre, Union Station and CF Markville. These limited-edition Kits are available on a first come, first served basis.
“These kits combine our best-selling products, bundled to address the most relevant skin concerns we’re seeing among our clients,” says Christina Ho, Senior Brand & LAM Manager at Laser Clinics Canada. “With several price points available, the kits offer excellent value and suit a variety of gift-giving needs, from those new to cosmeceuticals to those looking to level up their skincare routine. What’s more, these kits are priced with a savings of up to 33 per cent so gift givers can save during the holiday season.
There are two kits to select from, each designed to address key skin concerns and each with a unique theme — Brightening Basics and Hydration Heroes.
Brightening Basics is a mix of everyday essentials for glowing skin for all skin types. The bundle comes in a sleek pink, reusable case and includes three full-sized products: 200ml gentle cleanser, 50ml Moisture Defence (normal skin) and 30ml1% Hyaluronic Complex Serum. The Brightening Basics kit is available at $129, a saving of 33 per cent.
Hydration Heroes is a mix of hydration essentials and active heroes that cater to a wide variety of clients. A perfect stocking stuffer, this bundle includes four deluxe products: Moisture 15 15 ml Defence for normal skin, 10 ml 1% Hyaluronic Complex Serum, 10 ml Retinol Serum and 50 ml Expert Squalane Cleansing Oil. The kit retails at $59.
In addition to the 2024 Holiday Gifts Kits, gift givers can easily add a Laser Clinic Canada gift card to the mix. Offering flexibility, recipients can choose from a wide range of treatments offered by Laser Clinics Canada, or they can expand their collection of exclusive Skinstitut products.
Brightening Basics 2024 Holiday Gift Kit by Skinstitut, available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.
Hydration Heroes 2024 Holiday Gift Kit by Skinstitut – available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.
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.
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.
