DIANE'S CORNER ... Celebrate Ehlers-Danlos Syndrome Awareness Month
Are you living with Ehlers-Danlos syndrome? Do you know someone who is? If so, then it’s time to get ready for the eponymous month, raising awareness for people across the globe with this rare and difficult-to-diagnose condition.
For years, the medical community has struggled to identify patients with this set of syndromes correctly. There’s a drive to highlight the symptoms of the condition, raise money, educate the public, and fund raise for those affected.
Ehlers-Danlos syndromes are a collection of more than thirteen hereditary disorders that affect the connective tissue throughout the body. People with the condition have mutations of specific genes that affect the ability of cells to create proteins to construct joints in the usual way. These syndromes, therefore, result in symptoms such as chronic pain, fragile skin, the ability to flex joints beyond the normal range, and rupturing of internal organs. While many of the effects of the disorder are mild, some can be life-threatening and require immediate hospitalization.
People with Ehlers-Danlos syndrome historically struggled to obtain accurate diagnoses. Many of the symptoms closely resemble those of other more common diseases, causing doctors to make incorrect diagnoses. At root, Ehlers-Danlos syndromes are genetically heritable. So in an era marked by a lack of DNA testing, an accurate diagnosis was difficult.
Recently, however, there has been substantial progress towards classifying and identifying the conditions. In 2017, researchers published more than eighteen papers in the Journal of Medical Genetics, clarifying the different varieties of the disease and better characterizing their properties. The Ehlers-Danlos Society added to the body of research and publicly-available information by releasing a review of the research materials, backed by more than ninety experts. It was the first significant update for more than twenty years.
The result of this effort is a considerably improved understanding of the syndrome at the scientific level. The challenge is to filter the information out to medics, schools, and the public at large.
History of Ehlers-Danlos Syndrome Awareness Month
Before 1997, researchers classified Ehlers-Danlos Syndrome into ten specific types, based on specific genetic mutations associated with symptoms (such as connective tissue issues). As genetic testing improved, however, the number of Ehlers-Danlos-type syndromes began to expand, with more than thirteen currently classified.
The rationale for Ehlers-Danlos Syndrome Awareness Month, however, isn’t as straightforward as calling for more accurate DNA tests. Many researchers believe that medical science is only just scratching the surface of syndromes related to the original set. Genetic testing, therefore, may not detect all instances of the disease. Some mutations may be so rare that there are just a handful of people affected by them throughout the world. In some cases, a person presenting with Ehlers-Danlos-like symptoms may be the only example.
There is a need, therefore, to pay close attention to the clinical manifestations of the condition, not just testing. Individual patients may present with all the hallmarks of the syndrome, but DNA procedures for the most common varieties of Ehlers-Danlos may not provide confirmation.
The Ehlers-Danlos Society ran the first Ehlers-Danlos Awareness Month in 2006. Since then, the organization has worked tirelessly to improve the public consciousness of the condition by supporting people around the world with the syndrome. In 2017, the society attempted some branding and social media outreach under the “Dazzle Together” hashtag.
The story behind the name for the campaign is interesting. Traditionally, medics called patients presenting with Ehlers-Danlos syndromes “zebras,” a reference to the medical school mantra “when the hoofbeats, think horses, not zebras.” The original saying inculcated trainee doctors in the idea that they should proceed with the most obvious diagnosis first – the horse – and only investigate less clear-cut symptoms afterwards – the zebra.
The problem for Ehlers-Danlos patients is that they are zebras – they have a rare disease. So applying the standard medical school wisdom doesn’t help them. In fact, it is counterproductive.
The “dazzle” part of the hashtag comes from the traditional way of referring to a group of zebras as a dazzle. Thus, the “Dazzle Together” campaign was born. And now, the community works together to improve awareness of the condition, raise funds for research, and reach out to the public over social media.
There are a lot of different people involved in Ehlers-Danlos Syndrome Month. Patients, health professionals, charities, donors, and caregivers all work to get the critical message discussed here out to the public. The Ehlers-Danlos Society provides brochures, posters, digital presentations, and instructions for members for how to best make use of their time.
thanks for the funnies, Sue
Joke of the Day
TIMMY'S TEST PAPER
Teacher: “I hope I didn’t see you looking at Timmy’s test paper?”
Little Johnny: ”I hope you didn't see me either!”
Little Johnny: ”I hope you didn't see me either!”
Word of the Day
gazump
MEANING:
verb tr.:
1. To raise the price after accepting an offer from a buyer.
2. To offer a higher price to a seller on something that’s already being sold to another.
3. To preempt something, especially by questionable means.
4. To swindle.
ETYMOLOGY:
Of uncertain origin, perhaps from Yiddish gezumph (to overcharge). Earliest documented use: 1928.
NOTES:
Gazumping often happens in house sales. You have found your dream house, everything looks great, price negotiations are finished, inspection is done, you are ready to sign the contract, and then the seller receives a higher bid and gazumps: raises the price on you. It’s mostly seen in the UK. The term is often used in an extended sense: to trump something by the use of dubious methods. There’s a counterpart to today’s word. Meet it on Friday.
USAGE:
“Its ‘final’ offer was gazumped by a last-minute interloper.”
Alistair Osborne; Hedge Your Bets over Sirius Bid; The Times (London, UK); Feb 20, 2020.
“Ms. Lively used her website to gazump all gossip sites by announcing her pregnancy.”
Vanessa Friedman; The Goop Effect; The New York Times; Nov 16, 2014.
1. To raise the price after accepting an offer from a buyer.
2. To offer a higher price to a seller on something that’s already being sold to another.
3. To preempt something, especially by questionable means.
4. To swindle.
Alistair Osborne; Hedge Your Bets over Sirius Bid; The Times (London, UK); Feb 20, 2020.
“Ms. Lively used her website to gazump all gossip sites by announcing her pregnancy.”
Vanessa Friedman; The Goop Effect; The New York Times; Nov 16, 2014.
Idiom of the Day
- A chain is only as strong as its weakest link
Meaning: If one member of a team doesn’t perform well, the whole team will fail.
This Day in History
0330 - Constantinople, previously the town of Byzantium, was founded.
1910 - Glacier National Park in Montana was established.
1927 - The Academy of Motion Picture Arts and Sciences was founded.
1947 - The creation of the tubeless tire was announced by the B.F. Goodrich Company.
1949 - Siam changed its name to Thailand.
1960 - Israeli soldiers captured Adolf Eichmann in Buenos Aires.
1997 - Garry Kasparov, world chess champion, lost his first ever multi-game match. He lost to IBM's chess computer Deep Blue. It was the first time a computer had beaten a world-champion player.
1998 - A French mint produced the first coins of Europe's single currency. The coin is known as the euro.
2000 - India's population officially reached 1 billion.
thanks, Dana
DAILY SQU-EEK
If You Were Born Today, May 11
You are gifted, talented, and well-respected. You are not fond of others telling you what to do, so a position in which you lead others or you are your own boss suits you best. You are independent but also thrive in partnership. While you are reliable, hard-working, practical, and solid overall, your emotions can be quite contradictory. A perfectionist at heart, your calm exterior can sometimes hide a worrying nature. Famous people born today:
1888 Irving Berlin [Israel Isidore Baline], American composer and lyricist considered one of the greatest songwriters in American history (God Bless America, White Xmas), born in Tyumen, Russian Empire (d. 1989)
1904 Salvador Dali, Spanish surrealist artist (Crucifixion), born in Figueres, Spain (d. 1989)
1963 Natasha Richardson, English actress (Gothic, Handmaid's Tale), born in London, England
1982 Cory Monteith, Canadian actor and musician (Glee, Monte Carlo), born in Calgary, Alberta (d. 2013)
1983 Holly Valance, Australian actress (Felicity "Flick" Scully-Neighbours) and singer, born in Melbourne, Victoria
READERS INFO
1.
(Not So) Totally Useless Facts of The Day:
A misomaniac is a person who hates everything and everyone.
Some people can remember almost every day of their lives. The condition is called "Hyperthymesia."
On average, soccer players run seven miles per game.
2.
thanks for the Offbeat Holiday, Patty
MAY 11: NATIONAL EAT WHAT YOU WANT DAY
0330 - Constantinople, previously the town of Byzantium, was founded.
1947 - The creation of the tubeless tire was announced by the B.F. Goodrich Company.
1949 - Siam changed its name to Thailand.
1960 - Israeli soldiers captured Adolf Eichmann in Buenos Aires.
1997 - Garry Kasparov, world chess champion, lost his first ever multi-game match. He lost to IBM's chess computer Deep Blue. It was the first time a computer had beaten a world-champion player.
1998 - A French mint produced the first coins of Europe's single currency. The coin is known as the euro.
2000 - India's population officially reached 1 billion.
thanks, Dana
DAILY SQU-EEK
A misomaniac is a person who hates everything and everyone.
Some people can remember almost every day of their lives. The condition is called "Hyperthymesia."
On average, soccer players run seven miles per game.
Though it's definitely not healthy, this is a food holiday that we want to celebrate more than once a year.
3.
Coronavirus Style by Sylvia, CAN DO Correspondent
When I go out of town to visit people, I love poring through their cookbooks. I have found many awesome recipes this way. Now with Facebook we can join recipe clubs, and I belong to two vintage recipe groups. Most of this food is no longer trendy, but comfort food is comfort food. So today I shared my mother's meatloaf recipe. She only did a few dishes well, and this was one of them. She tended to over cook everything except her pies, but I think that comes from a time when poor kids could have TB, plantar warts and worms. And to this day, I find juicy chicken a little unappealing.
I can share a funny story about her overcooking things.
She liked to make Beef Stroganoff in the late 60's. She had this electric skillet, you see, and one time, deciding to be thrifty, instead of using stewing beef, fried cut-up cubes of leftover pot roast in a good quarter-inch of oil. She let those babies fry until crisp on all sides, for about 45 minutes. Then she came the time to throw in some onions, and make the sauce with tomato paste and sour cream. Now, all this time she had been boiling noodles. So we had a careful balance of textures - crisp and crunchy beef briquettes and wheat mush married by a not-untasty though somewhat sticky pink sauce. The last time she made this, you could hear the noisy crunching all around the table. She was not pleased, as though we somehow could crunch on purpose. Beef with the fun texture of sponge toffee that did not melt in your mouth.
However, some say this is the best meatloaf they've ever tasted, and a few people who hate meatloaf have truly liked. Even my Quebecois friends with their disdain of English dishes liked this one. The recipe is going back to when my mother learned how to make it as a young girl during the Depression, possibly from her mother, but possibly in Home Economics, because my grandmother made her do all the cooking. But it was one of the few dishes my mother did very well.
1 lb. ground beef (can be half ground pork)
1 egg
1 handful of oatmeal
1 small onion, chopped
1 stick of celery, chopped
1 squirt of ketchup
Salt and pepper to taste
Mush this all up and pack it into a loaf pan, slamming it down on the counter a couple of times to release any air bubbles and make it easier to cut when cold (as if). Press a trench longways down the middle and top with sauce made with:
3/4 c. ketchup
1 T. mustard
1/4 c. brown sugar
Bake it for an hour at 350 degrees. You may want to use a baster to suck out any grease halfway through the cooking, and let it sit a few minutes before serving so it will be easier to slice.
It does make a great sandwich if you can keep some leftovers, but we rarely had leftovers when I was growing up. If there were any, there would be a race to the fridge to make a sandwich that would begin at about 11:00 the next morning. With my kids, there were no leftovers unless I hid a slice before dinner for my lunch; and there are certainly none when I make it for my son's family now. Which, though having cooked professionally himself, he refuses to learn how to make - only I may make it. I think my meatloaf has somehow become a charm for him, in an effort to ward off my eventual demise, thus keeping me immortal.
Though it's definitely not healthy, this is a food holiday that we want to celebrate more than once a year.
When I go out of town to visit people, I love poring through their cookbooks. I have found many awesome recipes this way. Now with Facebook we can join recipe clubs, and I belong to two vintage recipe groups. Most of this food is no longer trendy, but comfort food is comfort food. So today I shared my mother's meatloaf recipe. She only did a few dishes well, and this was one of them. She tended to over cook everything except her pies, but I think that comes from a time when poor kids could have TB, plantar warts and worms. And to this day, I find juicy chicken a little unappealing.
I can share a funny story about her overcooking things.
She liked to make Beef Stroganoff in the late 60's. She had this electric skillet, you see, and one time, deciding to be thrifty, instead of using stewing beef, fried cut-up cubes of leftover pot roast in a good quarter-inch of oil. She let those babies fry until crisp on all sides, for about 45 minutes. Then she came the time to throw in some onions, and make the sauce with tomato paste and sour cream. Now, all this time she had been boiling noodles. So we had a careful balance of textures - crisp and crunchy beef briquettes and wheat mush married by a not-untasty though somewhat sticky pink sauce. The last time she made this, you could hear the noisy crunching all around the table. She was not pleased, as though we somehow could crunch on purpose. Beef with the fun texture of sponge toffee that did not melt in your mouth.
However, some say this is the best meatloaf they've ever tasted, and a few people who hate meatloaf have truly liked. Even my Quebecois friends with their disdain of English dishes liked this one. The recipe is going back to when my mother learned how to make it as a young girl during the Depression, possibly from her mother, but possibly in Home Economics, because my grandmother made her do all the cooking. But it was one of the few dishes my mother did very well.
1 lb. ground beef (can be half ground pork)
1 egg
1 handful of oatmeal
1 small onion, chopped
1 stick of celery, chopped
1 squirt of ketchup
Salt and pepper to taste
Mush this all up and pack it into a loaf pan, slamming it down on the counter a couple of times to release any air bubbles and make it easier to cut when cold (as if). Press a trench longways down the middle and top with sauce made with:
3/4 c. ketchup
1 T. mustard
1/4 c. brown sugar
Bake it for an hour at 350 degrees. You may want to use a baster to suck out any grease halfway through the cooking, and let it sit a few minutes before serving so it will be easier to slice.
It does make a great sandwich if you can keep some leftovers, but we rarely had leftovers when I was growing up. If there were any, there would be a race to the fridge to make a sandwich that would begin at about 11:00 the next morning. With my kids, there were no leftovers unless I hid a slice before dinner for my lunch; and there are certainly none when I make it for my son's family now. Which, though having cooked professionally himself, he refuses to learn how to make - only I may make it. I think my meatloaf has somehow become a charm for him, in an effort to ward off my eventual demise, thus keeping me immortal.
Pictures of the day
Pictures of the day
Green Wheat Field with Cypress is an oil-on-canvas painting
by Dutch Post-Impressionist artist Vincent van Gogh. It is part
of a series of paintings of wheat fields that he painted in 1889
while a voluntary patient in the Saint-Paul asylum in Saint-Rémy-
de-Provence, France. Besides a fondness for cypress trees, Van
Gogh had a special affinity with wheat fields, depicting them
dozens of times over the years; to him, they symbolized the
cycle of life and death, and he found in them both solace and
inspiration. This painting is now in the collection of the National
|
Northwestern France
Mont-Saint-Michel at sunset.
knit
thanks, Sheri
knit
thanks, Emma
Bahaar
knit
knit
Knit Pattern of the Day:
thanks, Shelley, New York Food Correspondent
ADULT COLORING
CRAFTS
thanks, Sara
ADULT COLORING
FUN
Card question
A small number of cards has been lost from a complete pack. If I deal among four people, three cards remain. If I deal among three people, two remain and if I deal among five people, two cards remain. How many cards are there?
answer:
There are 47 cards.
CRAFTS
EASY DIY WALL HANGING WITH YARN
CHILDREN'S CORNER ... coloring
PUZZLE
SUDOKU ... medium
CLEVER
CHILDREN'S CORNER ... coloring
PUZZLE
| arrant aviator bacon blame certainly | denied desire different dormant endorse fail falcon fish fleet | hoarse irritate occupation quick refine reprimand | sees single sneak soubriquet status stool | thrifty value vixen vocal wheel windy |
SUDOKU ... medium
solution:
QUOTE
thanks, Ella
CLEVER
thanks, Heide
EYE OPENER
thanks, Sofia
In the last few days, there have been rumblings of a sports renaissance:
The NFL released its 2020 schedule; the season is still scheduled to start Sept 10.
"The Match," part 2: Tiger Woods and Peyton Manning will battle Phil Mickelson and Tom Brady in a charity golf tournament on May 24.
NASCAR is set to return on May 17.
The Bundesliga, Germany's top soccer league, will return May 16. Since no spectators will be allowed, one team is selling cardboard cutouts of fans to place around the stadium.
Bottom line: Just like any other industry, sports will return very slowly. And with strict public health measures in place, it'll look far different than when we left it.
If he can relax & rest, we sure can too
A THOUGHT FOR TODAY:
You are the sky. Everything else -- it's just the weather. -Pema Chodron, Buddhist nun and author (b. 1936)
OPTICAL ILLUSION
www.DianesDailyCorner.Blogspot.com
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