Reviews and recommendations are unbiased and products are independently selected. Postmedia may earn an affiliate commission from purchases made through links on this page.
Health
Those With Rare Diseases Need to Wait, as Usual
|
|
Science has developed the ability to research, develop and create functional cures for many of our so-called “incurable diseases”, but having the ability to do something and actually doing it are two different things. Medicine has always suffered from a problem with “knowing-doing”. It is the difference between what a doctor actually does for a patient and what can be done with all that we know. Developmental breakthroughs in medicine are allowing doctors to do things they never could imagine before. Sometimes these break-thoughts don’t fit into businesses/governmental financial or regulatory systems, meaning that it can take a long time for patients to actually benefit, a time many patients may not have.
The National Institutes of Health in America invest more than $40 Billion in biomedical research each year, and the private sector twice as much. The discoveries are valued by all, but why is it so hard to use these discoveries?
Science’s ability to engineer medicines has far outpaced how these medicines are actually built, tested, and put into human beings. Artificial Intelligence has assisted the community by mapping the human genome in efforts to cure various diseases. The US Government defines rare diseases as those that affect fewer than 200,000 people in America. Some affect only a handful of people. There are over 7000 different rare diseases, with more than 30 million people in America diagnosed with one of them. That is 10% of the US population. So improving how society can find and care for these patients could have a great impact. Problem is that the health system is not flagging enough people with these diseases, while many individuals don’t even know what disease they may have, or that they indeed have a disease. A.I. steps up front to assist in the recognition, tracking, analyzing, and identifying of these patients through computer-programmed systems. Put one’s symptoms into the machine, and often voila, a point from which a doctor can begin his medical investigation and treatment. A diagnostic odyssey in each individual case.
Artificial Intelligence has a prominent place within our health system, including helping design new treatments, helping predict which treatment is better for which patient, and screening for rare diseases with suggested diagnoses to boot. Why are many with rare diseases often left out in the cold, to search on their own for a cure? Money! Simple.
Who makes medicines, and invests millions in treatments and research for diseases? Pharmaceutical Firms.
What are they but profit centers for investment bankers, massive corporations, and a financial structure centered upon the shareholder, and not the average joe? Solutions can be found, but the willingness to spend way beyond what a firm can make in profits needs to be there. Sure our DNA is constantly changing, and evolving biologically. Making a drug that cures cancer, may cure some, but certainly not all forms since each person is unique, their biology specific to that person. Many doctors realize that their methods are much like witch Doctors, forever experimenting with the specific individual’s condition.
Our Health system is tied to our financial system. That is the root of it. So long as the doctors, hospitals, and researchers are tied to profit (our financial system) the necessary technology, research, and investment will not be found for those with rare diseases. I have a disease that has no cure. My immune system is attacking the tissue in my mouth. It is sorely painful, personally transformative, and damn if you could find a doctor who is a real expert in the field. Since it is rare, the institutions of the industry will not find proper medicine for its management, let alone its cure. I live with it, and the disease manages the way I eat, what I eat, how I clean my teeth, how I sleep, and interact with my partner too. This disease can transfer to another. Great eh!
For those of you who have or know of someone who has a rare disease, all I can say is to be patient. The present-day financial and healthcare systems need to change drastically, with governmental intervention in all aspects of research, planning, and manufacturing of medicines. Out of the hands who care for themselves, and hopefully into the hands of those who care about you and those you love.
Steven Kaszab
Bradford, Ontario
skaszab@yahoo.ca
|
|
The freshness of spring is giving way to the languor of summer. It’s also that time of year when I step up my health and fitness habits, with the help of a wellness weekend getaway. Check out these ten wholesome ways to experience Whistler.
1. Eat well, be well at a new event series
Making its debut the Nourish Spring Series by Cornucopia celebrates the season every weekend in June with farm-to-table fare, farm tours, lavish wellness dinners, healthy brunches and activities to refresh both mind and body. Sit down to a four-course spring harvest tasting menu (Brome Lake duck breast with Pemberton beets, anyone?), brush up on grilling skills with an expert chef, pick up painting pointers on an art picnic or jump into an outdoor Zumba class. Order tickets online at whistler.com/events/spring-cornucopia.
2. Chill at a spa
With more than 12 spa facilities in town, it could be said that Whistler has everyone’s back. Pop into the Whistler Day Spa for a 75-minute stress relief massage using Swedish relaxation techniques or the Taman Sari Royal Heritage Spa for an 80-minute herbal steam massage using pouches filled with Javanese turmeric, ginger and other spices. Have more time? Dip into the hot-cold-and-relaxing thermal journey at the silent Scandinave Spa Whistler, home to open-air pools, cold-plunge baths, a Finnish sauna, Nordic showers and solariums in a tranquil forest setting.
3. Lace up for new guided hikes
Trek past alpine meadows flush with wildflowers on the way to glacier-fed Garibaldi Lake or meander through a fragrant rainforest before taking a dip in Crater Rim’s warm Loggers Lake. These are just a couple of guided hike options from Mountain Skills Academy & Adventures. Prefer to stay close to town? Sign up for the Whistler Alpine Hike and explore the gondola-accessed terrain of Whistler Blackcomb.
4. Embark on an ebike adventure
Sneak in some good clean fun with an ebike rental or guided tour. Explore Whistler’s car-free Valley Trail, a 46-km network of paved paths and boardwalks linking the resort town’s neighbourhoods and lakes, beaches, parks and viewpoints along the way. Go it alone or hop on a full-suspension electric-assist mountain bike with Whistler Eco Tours for a two-hour guided ride. Prefer an old-school ride or want to hit the alpine trails? Comfort cruisers, cross-country and downhill bikes are also on hand.
5. Expand the mind at an Indigenous exhibit
You have until October to view, the Squamish Lil’wat Cultural Centre’s Unceded: A Photographic Journey into Belonging. Shot at striking locales throughout the Sea to Sky Corridor, the exhibit brings together aspects of ancient traditions, modern Indigenous life, and colonization and development. Behold the bear dancer on Blackcomb Mountain, the cultural chief in the Fairmont Chateau Whistler lobby and the Squamish Nation chair standing in the middle of downtown Vancouver’s West Cordova St.
6. Get down, be healthy at a new café
Boogie back in time to the ’70s and ’80s at the new Rockit Coffee in Whistler Creekside. From the speaker-lined wall and vintage phones, radios and ghetto blasters to menu items like Espresso Greatest Hits and Drinks Just Wanna Have Fun, the colourful café exudes a decidedly retro vibe. Pull up a chair and order a nutritious Aero-Smoothie – choose from the Green Day, Bananarama or Strawberry Fields Forever – and pair it with a Veggie Eilish breakfast wrap or Prosciutto Rhapsody sandwich.
7. Check into wellness
Go for the Fairmont Chateau Whistler’s healthful options like daily yoga classes, guided excursions and access to pools, steam rooms, the fitness centre, tennis court and (soon) new pickle ball courts. But stay for the regionally sourced seasonal menus – complemented by the rooftop garden’s bounty from May to October – and no-proof cocktail selection in the Mallard Lounge.
8. Float down a winding river
Canoe, kayak or stand-up paddleboard along the meandering five-km-long River of Golden Dreams. After putting in at Alta Lake, paddle past riverbanks lined with wildflowers, foliage and forest, all the while keeping an eye out for beavers, otters, eagles and bears. Newbie paddlers are advised to go with a guide, as changing water levels can make for tricky steering and mandatory portages.
9. Connect with nature on a new birding trail
Watch for whiskey jacks, Clark’s nutcrackers and, come summer, lots and lots of swallows along the Sea to Sky Bird Trail. The fifth and most recent route to be added to the BC Bird Trail network along the Pacific Flyway, the new trail takes birders to alpine heights (lift ticket required) where they can spot olive-sided flycatchers and various raptors. Then it’s off to Rainbow Park on Alta Lake to spy common yellow throats and merlins.
10. Wake up beside a lake
Perched along the southern tip of Nita Lake in Whistler Creekside, Nita Lake Lodge checks off all the boxes for a dreamy wellness escape. Start with stunning water and valley views from luxe suites, currently undergoing a modern refresh slated to wrap in time for summer. Then there’s the new onsite restaurant, The Den, where plant-based alternatives share space with meat and seafood items on the seasonal menus. Topping off a salubrious stay at Whistler’s only lakeside hotel is an award-winning spa with rooftop hot tubs.
|
|
Manitoba researchers looking for people to take part in a national HIV Stigma Index project are only about halfway to their goal of hearing from at least 75 people living with a positive diagnosis.
The international peer-driven research project helps understand the stigma associated with HIV and supports those living with a diagnosis.
“I wouldn’t say that anybody ran out and said ‘I’m gonna go get HIV today and see how that happens.’ Things happen to people and it’s our duty as human beings to support people no matter what they’re going through,” research co-ordinator Arthur Miller told CBC Information Radio Wednesday.
The Canadian HIV Stigma Index is a community-led and community-based research study, part of the international implementation of the People Living with HIV Stigma Index project
Participants are interviewed by another person living with a positive diagnosis. Interviews are about an hour-and-a-half long and can be done in person, by phone or through a video conferencing platform, said Miller, a Mi’kmaw HIV activist based out of Nova Scotia and research co-ordinator of the project with REACH Nexus, under the MAP Centre for Urban Health Solutions at Unity Health Toronto.
The national project has been done in Ontario, Quebec, Atlantic Canada and British Columbia, and this is the second time it’s being done in Manitoba, with an updated survey.
Researchers collect information related to stigma, discrimination and human rights, with the aim of better understanding the social determinants and stigma across systems like health care, schools and legal fields. The research aims to help people develop supports and policies at both local and national levels.
Peer-driven aspect crucial
Jared Star, a research manager at Winnipeg’s Nine Circles Community Health Centre, which specializes in HIV prevention and care, said the HIV Stigma Index’s peer-driven aspect is crucial for participants.
“They know that they won’t be judged,” he said. “They won’t have to explain situations and details that come naturally for them, because they’re talking to somebody with the same experience.”
Star is also a research consultant and PhD student with expertise in sexual health, alongside his work with Nine Circles, which is working closely with Miller on the project.
“It’s better for the study if we can collect the data in a shorter period of time, but because it’s qualitative research, it tends to take longer than a survey,” said Star. “But the more we can get up front and faster, the better.”
Star said the information gained from the project will help people move from a place of supporting and sustaining stigma to actively challenging and resisting it.
“I think if we do a good job and we’re able to get that information and then develop interventions that target stigma, we will be able to contribute to a reduction in HIV infections in Manitoba,” he said.
Education key to understanding
Much more is known about HIV now than 30 years ago — like how to prevent transmission and that it’s no longer a death sentence.
With proper care, people who are HIV positive can lead long, healthy lives.
Miller said education is key and pointed to the fact that many don’t understand somebody with an undetectable viral load who adheres to treatment can’t transmit HIV through sexual intercourse.
“This is big for people with HIV,” he said. “For me, it felt like I got part of my life back.”
Manitobans willing to share their experiences through the HIV Stigma Index project can contact Miller at arthur.miller@unityhealth.to or by phone at 1-877-347-1175 to begin the process.
“The great thing about this study is we’re building this network of people living with HIV,” Miller said. “You’re going to be talking with someone living with HIV, so they can relate and share some experiences.”
|
|
This is Oakville’s coronavirus update for Saturday, May 27, 2023. New, active cases of COVID-19 in Halton have nearly doubled for the second week in a row, and outbreaks at local long-term care homes are growing.
Oakville is reporting 22 new cases this week, about the same as the week before. But these last two reports from Halton regional health are the highest numbers of new cases in months – and active cases are now trending upwards by 50-100% weekly.
The outbreak that opened earlier this month at Oakville’s West Oak Village long-term care home has been contained to the Harbour floor. But there are two new outbreaks that have opened this week in other parts of Halton, including one at Oakville’s Northridge home on the Chisholm floor.
Halton continues to fall behind on our booster shots: only 1 of every 10 people in Halton have a full series of immunization, and the percentage of residents with outdated immunization has grown every week since the start of 2023. Among those 40 and under, those fully immunized is now below 5%.
The United States this week has said they and the CDC will no longer be tracking new, aggregate daily COVID-19 cases and deaths or new nationwide testing data.
The World Health Organization (WHO) has declared that after more than three years, the COVID-19 global health emergency is now over. WHO has determined that “COVID-19 is now an established and ongoing health issue which no longer constitutes a public health emergency of international concern (PHEIC).”
765 million cases of COVID-19 have now been recorded worldwide since the start of the pandemic; 6.9 million people have died.
**Vaccine booking: Fourth doses (second booster doses) of vaccine are now available for anyone in Halton age 5 and up, though fourth doses must be at least five months since your last dose and 90 days since having COVID-19.
Halton continues to book first and second-dose vaccinations for all residents age six months and older, plus third-dose boosters for anyone age 5 and up.
Media51 mins ago
Social Media Can Harm Kids. Could New Regulations Help?
Media2 hours ago
Saskatoon pizza shop overwhelmed by orders after heartfelt social media plea
Health3 hours ago
Wellness and rejuvenation on a Whistler weekend
-
Tech20 hours ago
Asmongold claims he was "kicked out" by Redfall’s developers after he called the game a "boring looter-shooter with no imagination"
-
Art20 hours ago
Soaring value of Maud Lewis works invites fraud, art experts say – CBC.ca
-
Health19 hours ago3 tick-borne diseases, mpox added to list of notifiable diseases, illnesses in N.S. – CBC.ca
-
Art20 hours ago
Couple May Need to Pay $250,000 to Have Banksy Mural Removed from Their Home – ARTnews
-
Art20 hours ago
Newmarket's Riverwalk Commons filled with art for Night Market – NewmarketToday.ca
-
Real eState20 hours ago
Downtown real estate and commercial buildings are struggling. Why won't landlords lower the rent? – Slate
-
Health15 hours ago
HIV stigma index researchers look for Manitobans with positive diagnoses to share experience
-
Economy22 hours ago
Consumer confidence is surging just as banks brace for defaults. What’s going on?
