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When A Cure Comes Too Late
Tyler Parish thinks of himself as "the last dinosaur."
If he had been born decades earlier with the same genes, he would not have had access to the medical care and technology that allowed him to see his 43rd birthday.
But if he had been born today with access to gene therapy for spinal muscular atrophy, he might have been able to walk without assistance. He might have been able to live a life without fear of impending medical catastrophe. He would probably not be in a long-term care hospital in Boston, with a team of doctors trying to decide whether he needs a tracheostomy tube and a ventilator at night for the rest of his life.
The way Mr. Parish sees it, the life he has lived will one day become something of a historical curiosity. His experience of S.M.A., with all the suffering it has entailed, will most likely be rendered extinct.
Gene therapy has seen remarkable and highly publicized success in recent months, from the Food and Drug Administration's approval of what amounts to cures for sickle cell disease to the news that a boy with congenital deafness could hear for the first time in his life after gene therapy.
These stories are, unsurprisingly, the ones in the headlines. But as science moves forward, there are an increasing number of people like Mr. Parish. There are life-changing treatments available for his disease, but they seemingly cannot reverse the damage that has already been done. A growing population of patients is faced with a challenging question: What is it like for those who know that their disease could be cured or significantly managed in their lifetimes but that they won't be able to — or might choose not to — see that benefit?
"When I talk as someone who is older, who is missing out on some of these things, it's not from a bitter place. It's from a place of, 'Thank God that these younger people are born at the right moment in time,'" Mr. Parish told me. "I love the idea that a kid can be born with S.M.A. And never know the infinite desperate medical situations, the social situations they're going to be able to avoid."
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FDA Approves First Treatment For Severe Frostbite
CNN —
The US Food and Drug Administration on Wednesday approved the first treatment for severe frostbite to reduce the risk of finger or toe amputation in adults.
Iloprost injection, marketed under the brand name Aurlumyn, is a vasodilator, a drug that opens blood vessels and prevents blood clotting.
"Having this new option provides physicians with a tool that will help prevent the lifechanging amputation of one's frostbitten fingers or toes," Dr. Norman Stockbridge, director of the Division of Cardiology and Nephrology in the FDA's Center for Drug Evaluation and Research, said in an FDA news release.
Related article How to stay safe and healthy during extreme cold this winter season
"It's a game-changer, in my opinion," said Dr. Peter Hackett, a professor of medicine at the University of Colorado Anschutz Medical Campus who specializes in high-altitude and wilderness medicine. "It's a major step forward in frostbite treatment in the United States."
Frostbite happens when skin and underlying tissues freeze, limiting blood flow to the area. Early symptoms include skin redness and pain, followed by numbness and white or grayish-yellow skin discoloration, according to the US Centers for Disease Control and Prevention.
Mild frostbite, also known as frostnip, does not cause permanent skin damage. However, severe frostbite can lead to permanent damage and require amputation, according to the FDA.
"Severe frostbite is not a very common problem in the US, but it's a devastating problem for those that have the injury because severe frostbite almost always leads to amputations," Hackett said.
There are not many effective treatments for severe frostbite. In recent years, physicians have tried other clot-busting drugs to save frostbitten fingers and toes, but these medications come with a high risk of bleeding and are effective only within 24 hours of the injury, Hackett said.
In contrast, he said, iloprost does not carry a risk of bleeding and can be used up to three days after the injury. He added that iloprost has been used to treat severe frostbite in other parts of the world – like Canada, Nepal and Europe – for years.
Iloprost was originally approved in 2004 in the US as an inhaled medication to treat pulmonary arterial hypertension, a type of high blood pressure in the lungs.
Its efficacy in treating severe frostbite was demonstrated in a small clinical trial that showed that no participants who had severe frostbite and received injections of iloprost alone needed an amputation after a week, compared with 19% of those receiving iloprost and other unapproved medications for frostbite and 60% of those receiving only other medications.
Common side effects of iloprost include headache, flushing, fast heart rate, nausea, vomiting, dizziness and low blood pressure resulting from the dilation of blood vessels, according to the FDA.
"Really, frostbite is an injury that needs to be prevented, not treated," Hackett said.
People should have proper clothing, equipment and training before embarking on cold-weather outdoor activities, he said.
Clogged By Constipation? Woman Claims Eating A Whole Orange — With Peel — Can Cure It In Minutes
An apple a day keeps the doctor away, but can an orange a day keep the constipation at bay?
A woman on Instagram claimed in a viral video that eating an entire orange — peel included — can cure constipation in just minutes.
The video, originally posted in Dec. 2022, has just recently gone viral after she reposted it in Dec. 2023, garnering a collective 23.6 million views.
Instagrammer @lilsipper shared her step-by-step "cure" for constipation, which involves washing the outside of the orange, slicing it into wedges, coating each slice with cinnamon and cayenne pepper "generously" and eating the entire thing including the peel.
"Wait 5-10 minutes and the rest is history!" she wrote.
Bethany, the woman behind the account, explained that this works because "oranges contain naringenin, a flavonoid shown to help with constipation in general, and studies show that naringenin can also have a laxative effect."
She added in the caption, "Cayenne pepper and cinnamon contain capsaicin, which trigger your TRVP1 receptors (located in your mouth and also throughout your body and GI tract) and stimulate your GI tract—making things move through quite fast!"
But does this zesty concoction really work?
While whole oranges do indeed contain lots of fiber and water — two elements known to help relieve constipation — there's nothing particularly special about oranges that will make you go to the bathroom, experts said.
"The fiber in orange peels isn't anything special compared to other fibers," Amy Brownstein, MS, RD, a registered dietitian and owner of Nutrition Digested, told Health.
Orange peels are generally safe to eat, but harmful substances like pesticides or bacteria can be living on the surface, so be sure to wash the fruit thoroughly.
However, some people might experience negative side effects from the peel.
"For some people, orange peels can cause an upset tummy, so start with small amounts first," VenHuizen said.
Brownstein added, "The texture and flavor of orange peels may be difficult to tolerate or aggravate any jaw or chewing issues."
A woman on Instagram claimed in a viral video that eating an entire orange — peel included — can cure constipation in just minutes. KD Photos – stock.Adobe.Com Orange peels are generally safe to eat, but harmful substances like pesticides or bacteria can be living on the surface, so be sure to wash the fruit thoroughly. Instagram / @lilsipperAn orange with its peel intact is 82% water and has 7 grams of fiber, which might be a significant amount, but it's also not likely to send you running to the toilet — especially for those who are vulnerable to constipation, including those who suffer from IBS.
"For a person prone to constipation, there is no way that eating a high-fiber food is going to produce immediate effects. That's just not how fiber works," Danielle VenHuizen, MS, RDN, a registered dietitian and owner of Food Sense Nutrition, told Health.
"While fiber can promote regularity, it takes hours for fiber to reach the colon and help alleviate constipation," she said.
While whole oranges do indeed contain lots of fiber and water, two elements known to help relieve constipation, there's nothing particularly special about oranges that will make you go to the bathroom. Instagram / @lilsipperHowever, Bethany was right about oranges containing naringenin, but the studies that show the antioxidant has a laxative effect have only been performed on animals.
"Unfortunately, there are no studies to date on the use of naringenin for constipation in humans," VenHuizen said. "While two studies on mice and rats shed some light on how naringenin might support regularity, we cannot apply these same findings to humans."
Bethany also claimed that cayenne pepper and cinnamon contain capsaicin, which trigger your TRVP1 receptors, which can be true, but some stipulations go along with this claim.
"Both cinnamon and cayenne are high in a compound called capsaicin," VenHuizen said. "Capsaicin, in high doses, can trigger receptors that tell the intestines to start moving."
Some people have a bowel movement after consuming cayenne pepper and cinnamon, but it most likely won't happen quickly — consuming these spices could also make things worse.
"Increasing activation of TRVP1 receptors by ingesting cinnamon and cayenne could contribute to greater GI pain and discomfort instead of directly stimulating the digestive tract," Brownstein explained.
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