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Real-Life Sleeping Beauty, Nicole Delien Slept for 64 days Due to KLS Syndrome



Nicole Delien Kleine-Levin Syndrome

Nicole Delien is a real-life sleeping beauty. The 17-year old has what is called Kleine-Levin Syndrome, also called “Sleeping Beauty Syndrome.” A disorder that can led to a person sleeping for days on end.

Kleine-Levin Syndrome is very rare and only affects about 1,000 people worldwide, and is very hard to diagnose. Nicole Delian says it took doctors 25 months to diagnose her.  Some doctors thought it was just a virus, West Nile, or even epilepsy.  One doctor even told her mother that Nicole was faking sleep for attention. A doctor at Allegheny General Hospital in Pittsburgh, Pennsylvania, was able to finally diagnose her disorder and offer some suggestions on how to manage it, including medication that helps spread out her sleeping spells.

Delien’s mother told talk show host Jeff Probst that the teen has at times, slept 32 to 64 days in a row, waking only in sleepwalking mode to eat or use the restroom. During her sleeping spells, Nicole Delien has no recollection of anything that happens. When she awakes, her parents slowly fill her in on what she missed. Sometimes they have to keep her home from school for a couple of extra days to ensure she’s not overwhelmed with questions because she is upset that she missed a lot.

“She’s never really adjusted to it,” her mother, Vicki Delien told Jeff Probst. “She’s 17 now and it really upsets her. She’s missed out on a lot.”

In addition to excessive sleeping, Kleine-Levin Syndrome symptoms often include appearing “spacey” or childlike. When awake they experience confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported according to KLS Foundation.

The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families. The cause of Kleine-Levin Syndrome is not known.  According to Oxford Journals, KLS disease predominantly affects adolescent males. Although no population-based studies reporting on KLS prevalence are available, it is generally considered an exceptionally rare disease.

Nicole Delien – Real-life Sleeping Beauty, Slept 64 Days In A Row

This 17-year-old teenager from North Fayette, Pa., has a rare condition called Kleine-Levin Syndrome — or “Sleeping Beauty Syndrome” — that makes her sleep 18 to 19 hours a day. And when she does wake up, she is often so tuckered out that she is in a sleepwalking state and doesn’t remember doing basic things like eating, according to KDKA-TV.

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Ocasio-Cortez Slammed Gilead Science’s CEO: Tax Money Is Used To Develop HIV Drug



AOC asks CEO why Truvada is sold for $2,000 in US when it is sold for $8 in Australia.
AOC asks CEO why Truvada is sold for $2,000 in US when it is sold for $8 in Australia. Photo: nrkbeta | Flickr | CC BY-SA 2.0

The HIV epidemic has become more prevalent in recent years, but scientists have already discovered several drugs that could potentially help HIV positive individuals contain and mitigate the infection brought by the sexually-transmitted virus. However, the price of the drug in the US makes it near to impossible for unfortunate victims to afford. Thankfully, HIV victims now have an ally in the government, and she is Rep. Alexandria Ocasio-Cortez.

On Thursday, AOC confronted the CEO of a company that distributes Truvada, the drug that is used to help HIV-positive individuals prevent infection, for selling it for nearly $2,000 when the same drug is sold in Australia for only $8.

“You’re the CEO of Gilead. Is it true that Gilead made $3 billion in profits from Truvada in 2018?” Ocasio-Cortez asked Gilead CEO, Daniel O’Day.

$3 billion in revenue,” he clarified.

“The current list price is $2,000 a month in the United States, correct?” she asked, referring to Truvada.

“It’s $1,780 in the United States,” O’Day responded.

“Why is it $8 in Australia?” Ocasio-Cortez countered.

Emtricitabine/tenofovir, sold under the brand name Truvada, among others, is a medication used to treat and prevent HIV/AIDS. It is a fixed-dose combination of two antiretroviral medications: tenofovir disoproxil and emtricitabine. For treatment, it is used either alone or together with other antiretroviral medication. While the drug can be used to prevent the transfer of the virus, it does not cure HIV/AIDS.

Emtricitabine/tenofovir was approved for medical use in the United States in 2004 and is on the World Health Organization’s List of Essential Medicines, the most effective and safe medicines needed in a health system. In the United States, the drug is sold for $1,780 while sold for meager price in other parts of the world.

As of 2014, the median cost per tablet, in Namibia and South Africa, was the US $0.20. In Canada, Truvada costs between $800 – $1,100 per month. Generic emtricitabine/tenofovir was approved by Health Canada in August 2017, with a wholesale cost of $400 per month.

The price of emtricitabine/tenofovir in the United States has been criticized by activists, who argued in a 2018 New York Times opinion piece that the high cost keeps the drug out of reach for millions, thus harming efforts to reduce new HIV infections.

“Truvada still has patent protection in the United States, and in the rest of the world it is generic,” O’Day explained, adding, “It will be generically available in the United States as of September 2020.”

According to the non-profit organization, Break The Patent, Truvada can reduce the risk of HIV by 99%, but Gilead Sciences has inflated the cost from $6 to more than $1,600 per month, despite the US taxpayer paying for almost the full cost of its development.

“The drug costs less than $6 a month to make, but Gilead charges patients more than $1,600 for a 30 day supply. This cost barrier has translated to less than 10% of the at-risk population currently taking the medication […} The truly infuriating part of that equation is that the drug manufacturer did not pay for the research that went into the development of the drug. YOU did. The US taxpayer, through the National Institutes of Health (NIH), paid for almost all of the research that went into developing Truvada as PrEP,” reads the organization’s statement on their website.

The organization argues that the Bayh-Dole Act of 1980 gives federal funding agencies the right to “March In” and ignore patent exclusivity should the holder fail to acknowledge “health or safety needs” of consumers by, for instance, engaging in price gouging, but until now, Gilead Sciences have been using the patent argument to justify their high prices for the drug.

AOC similarly slammed the company for selling the drug far more expensively in the US than in other countries even though people’s tax money funded the research for the development of the drug.

“I think it’s important here that we notice that we the public, we the people, developed this drug. We paid for this drug, we led and developed all the patents to create prep and then that patent has been privatized despite the fact that the patent is owned by the public, who refused to enforce it,” Ocasio-Cortez said.

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Diamonds Are A Girl’s Best Friend: How Jewelry Can Mitigate Overpopulation



Diamonds Are A Girl's Best Friend: How Jewelry Can Mitigate Overpopulation

The truth is obvious; overpopulation is causative to might as well every other problem that the world is facing; name it from inflation, poverty, or something as simple as the quality of the air you breathe. That’s what happens when we attempt to act like we have infinite resources from a finite source. Naturally, the exponential rate of human reproduction and the exponential need to satisfy the population is becoming too harmful to neglect.

In turn, government and non-government agencies have advocated family planning practices to mitigate the fast-paced human reproduction; one of which are contraceptives. In a growing family of 5 who earns just along with the minimum wage, it is irresponsible not to take any precaution. But contraceptives don’t only work for people who are economically strained; they also do well in terms of a person’s health like for women who already had four children or more, or people who have HIV/AIDS.

In the United States, women as young as 15 years old to women at 49 years old practice family planning according to the National Survey of Family Growth in 2017. These women usually use contraceptives in the forms of female sterilization and oral contraceptive pills. But throughout the years, there have been many other forms that have been made available in the market like condoms, implants, injections, patches, and coils.

However, contraceptive pills only work when you follow a set method of practice. Individually, these pills should be taken preferably at the same time every day. By not doing so, non-adherence could lead to, ironically, unwanted pregnancies which completely defeats the purpose. Women are not robots that are likely to take the daily pill at the same time every day, and sometimes they might also forget to do so. This leads to breaking the standard 30-day set and having to buy another one, which overall is not cost-effective.

The realization with the issue between behavior and contraceptives led researchers to seek other ways to let women jump on board the family planning train. In this case, the new solution is quite creative. Journal of Controlled Release suggested that women wear jewelry, but not just the usual pieces you use to accessorize alone.

In essence, the jewelry functions as a contraceptive through skin patches. Skin patches are widely used as a method to give medications to prevent motion sickness, support smoking cessation, as well as controlling symptoms of menopause. But the patches in these earrings are infused with contraceptive hormones.

Like a cigarette patch, you can stick the contraceptive patch to pieces of jewelry that you often use. These skin patches are composed of three different layers. One layer is impermeable and sticky to attach the patch onto the earring or the underside of the wristwatch or the inner side of the ring or necklace. The middle layer contains the contraceptive drug while the third layer is a skin adhesive that helps stick the patch to the skin firmly.

Through the close contact of the skin patches glued to the back of the earrings, the contraceptive hormones could easily penetrate the skin and absorbed into the body. Aside from earrings, they have also suggested the use of a necklace, wristwatch, and rings.

Among these pieces of jewelry, researchers said that the earrings and wristwatches might be the most useful and effective in giving drugs because they remain in close contact with the skin which will facilitate better absorption of the drug.

The dose of the drug in the skin patches is proportional to the area of skin contact, so the more extensive the skin contact, the higher the dose. This concept is vital in considering the use of skin patches to administer drugs other than contraceptive hormones since only those skin-permeable drugs needed in small quantities will show significant efficacy.

To prove the claim Postdoctoral Fellow Mohammad Mofidfar and Senior Research Scientist Laura O’Farrell and Prausnitz tested it with a pig’s ear and with hairless rats. They attached a contraceptive skin patch for 16 hours, and sufficient amounts of protective hormones were still found after 8 hours upon removing the piece. In other words, they will still work quite effectively after removing your jewelry.

Moreover, it is also advantageous for women that these patches are not changed every day, but rather only once a week and it could be transferred from one earring to another depending on what women would want to wear.

However, given that skin patches have long been established to be safe and effective, testing on human subjects with this innovative product is still needed before entirely being manufactured for the masses. But the breakthrough for more creative means of administering contraceptives for women opens a brand new door to control population growth without the excessive need to be constantly aware of the daily pill that most women in society have grown fondly of.

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E-Cigarettes May Lead To Seizures?




E-cigarettes, more commonly known as vapes, have been a trend nowadays, especially in teenagers and young adults. This product has been introduced to the market several years ago and has become a hit until now. It comes in various forms and sizes, ranging from a typical-looking cigarette to e-pipes and large tank-like devices.

Undeniably, one reason for the increasing popularity of these e-cigarettes is because traditional smoking of cigarettes have been associated with a lot of health problems including lung cancer. Some people claim that e-cigarettes are a safer alternative, so some cigarette smokers switched to e-cigarettes in an attempt to lessen the adverse effects of smoking on their health without compromising their desire for it.

However, this claim has not been concretely proven until now, and medical researchers still have a lot more to learn. Although several researchers say that e-cigarettes are less dangerous compared to traditional cigarettes, it is still important to note that they still contain substances such as nicotine that are harmful to the body and could cause deleterious effects.

In addition to this, e-cigarettes were also known to help cigarette smokers reduce or even quit smoking. This had an additional impact on its increasing popularity and demand, but researchers emphasized that this could still cause addiction due to the nicotine content.

When e-cigarettes came into view some years back, little was known about its long-term effects on health until now, but just recently, an issue has surfaced because of reports of seizure in e-cigarette users. The United States’ Food and Drug Administration (FDA) has issued a special announcement regarding this matter. It was found out based on the reports via the FDA’s Safety Reporting Portal and from poison control centers that between the year 2010 until early this year, there have been a total of 35 reports of seizures that could be associated with e-cigarettes mostly in young adults.

Nicotine, which is the main ingredient found in both traditional cigarettes and e-cigarettes, is known to cause nausea, sweating, dizziness, and tremors when ingested in large amounts. In severe cases, it could lead to seizures, and eventually death.

Medical toxicologists state that it is not possible to get that much nicotine by just smoking cigarettes, but one medical toxicologist said that it might be possible for e-cigarettes to deliver enough nicotine to cause a seizure. These are, however, only claims and not a fact yet due to the lack of data and studies.

Although it is known that nicotine could cause seizures when ingested or taken in high amounts, the FDA could still not establish the relationship between e-cigarette and seizures because of numerous factors. No distinct pattern can be seen in these cases making it difficult to conclude anything. 

Some of these people who had seizures experienced it after their first time trying the e-cigarettes while others were already using them for a while. Some had been previously diagnosed with seizures, and a number of them admitted that they also use other substances such as cannabis and amphetamine. Taking into account all of these factors makes it confusing to see the direct link between e-cigarette use and the occurrence of a seizure.

Another significant and potentially alarming fact with this issue is that most of those who experienced the seizures are young adults. According to the National Youth Tobacco Survey, more than 3.6 million middle and high school students used e-cigarettes in 2018 making it the most commonly used tobacco product in this age group. It was also discovered that teens who vape or use e-cigarettes are four times more likely to start smoking cigarettes that those who do not vape. This raises concern and actions are now taken to reduce the use of e-cigarettes and other tobacco products among teenagers and young adults.

Currently, the FDA is still investigating the issue regarding seizures and is alerting the public to this potentially dangerous health issue. It also encourages people to report to if they or someone they know experience seizures or any health-related problems with any tobacco product because they believe that the 35 reported cases are an underestimation of the possible total number of e-cigarette users who experienced a seizure.

Photo:Lindsay Fox

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