Race Against Time for Boy Battling Rare, Alzheimer’s-like Illness | Health News

By Dennis Thompson HealthDay Reporter

(HealthDay)

MONDAY, Nov. 2, 2020 (HealthDay News) — Connor Dobbyn is an energetic and loving 12-year-old, but he’s fading away every second.

Connor has Sanfilippo syndrome, a genetic brain disorder in children that experts compare to Alzheimer’s disease.

The boy already has lost some of what he’s learned in his short time on Earth, and every day he loses a little more.

“We’re on borrowed time. They don’t live through their teens,” said his mom, Marisa DiChiacchio, who lives with Connor in West Chester, Pa. “We have six years left, at most.”

Here’s the good news: Researchers think they’ve found a cure for Connor’s type of Sanfilippo, a therapy that replaces the bad gene in his body with a healthy working version.

But they need millions of dollars in funding to test this potential cure. Connor’s parents have set up a GoFundMe page with a goal of $3 million for a clinical trial that could save their son’s life.

“The research is done. It’s like right there, but they need the money to fund the clinical trial,” DiChiacchio explained.

Kids with Sanfilippo syndrome suffer from the build-up of a long-chain sugar molecule called heparan sulfate, which is normally used by the body to build cartilage, connective tissues, nerve tissues and skin, according to the Nemours Foundation.

These kids have a defect in one of the genes that make enzymes needed to break down heparan sulfate. Without those enzymes, heparan sulfate “builds up everywhere in the body and the brain,” explained Cara O’Neill, chief science officer and co-founder of the Cure Sanfilippo Foundation.

As the substance clogs the brain and body, kids begin experiencing the sort of mental and physical decline associated with dementia in seniors. Kids lose knowledge and skills they’ve gained, develop seizures, experience hearing and vision loss, find it difficult to walk and move, and even struggle to chew and swallow food, O’Neill said.

“These kids become nonverbal. They lose their ability to walk and talk. They’re in wheelchairs and in strollers. Almost all of them develop seizures and different movement disorders,” DiChiacchio said. “There’s literally no cure at this point. These kids are dying.”

Sanfilippo syndrome is relatively rare, occurring in about 1 out of every 70,000 children, O’Neill said.

“We think it’s underdiagnosed because it’s usually masked as autism,” said Glenn O’Neill, president and co-founder of the Cure Sanfilippo Foundation. “Kids exhibit the typical symptoms of autism early in life while parents are trying to figure out what’s going on. But then things actually begin actually going backwards, in the wrong direction.”

That’s what happened with Connor. He’d been struggling with developmental delays since he was 1 year old, and at age 5 he received a diagnosis of autism, DiChiacchio said.

But during a psychological evaluation in the third grade, educators were stunned to find a drastic decline in Connor’s IQ, his mom said.

“It was like a bomb went off,” DiChiacchio said. “His average IQ in kindergarten was 100, and

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Ask the Doctors: Studies show fitness trackers can predict illness | Health

Dear Doctors: My husband caught a cold this summer, and he swears the readings from his fitness tracker a few days before warned him that he was about to be sick. Do you think that’s really possible?

Dear Reader: Your husband’s observations about how changes in the data from his fitness tracker preceded the onset of a cold actually dovetail with the findings of a study that were published at the start of the year. And it’s not the first research of its kind to make the connection. With millions of people now using fitness trackers, scientists are diving into the trove of uploaded data to see what the details may be able to reveal about public health.

For anyone unfamiliar with fitness trackers, they’re wearable sensors, much like a wristwatch, that measure a range of activity and health metrics. Depending on the device — there are dozens of different brands and types — fitness trackers measure steps taken, total mileage, speed, direction, elevation climbed and duration of activity. On the physiological side of things, they can track heart rate, heart rhythms, skin temperature and minutes of sleep. Some manufacturers even claim that, using motion sensors and algorithms, their models can map how long someone spends in the various stages of sleep. (Full disclosure: Many sleep specialists are skeptical about the accuracy of the sleep-stage results.)

In a recent study, researchers from the Scripps Research Translational Institute analyzed data collected from the fitness trackers of 47,000 adult women and men. Using a minimum of two months’ worth of readings taken over the course of two years, which included activity, heart rate and sleep, the researchers found that their predictions of regional flu outbreaks matched the statistical data collected by the Centers for Disease Control and Prevention during those same time periods. An earlier study, published by researchers at Stanford University in early 2017, had come to similar conclusions. In that study, the scientists collected 250,000 daily readings from just 43 individuals over the course of a year. The participants wore a range of biosensors, which collected information about daily activity, heart rate, oxygen saturation levels, skin temperature and sleep data. They even tracked exposure to radiation, such as the X-rays and gamma rays encountered in air travel.

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Convalescent plasma did not reduce Covid-19 deaths or keep patients from severe illness in new study

The study, conducted in India and published in the medical journal the BMJ on Thursday, suggests that “as a potential treatment for patients with moderate Covid-19, convalescent plasma showed limited effectiveness.”

Convalescent plasma is the antibody-rich serum taken from the blood of people who recovered from Covid-19. The idea is that the plasma can help the immune response of patients still fighting the disease.

In August, the US Food and Drug Administration authorized the emergency use of convalescent plasma as a treatment option for hospitalized Covid-19 patients. However, data were still being collected in randomized controlled trials — the gold standard — to study the safety and effectiveness of the treatment. Last month, a National Institutes of Health panel said there’s no evidence backing the use of convalescent plasma to treat coronavirus patients and that doctors should not treat it as a standard of care until more study has been done.

Randomized controlled trials of convalescent plasma to treat Covid-19 patients are still underway in the United States.

The new study, called the PLACID trial, included data on 464 adults with moderate Covid-19 in 39 hospitals across India. Among them, 235 patients were randomly selected to receive convalescent plasma along with standard care for treatment and 229 patients received only standard care.

The new study showed that a higher proportion of patients who received convalescent plasma saw improvements in their symptoms of fatigue and shortness of breath compared with those given standard care, but there was no difference between patients when it came to resolving fever and cough.

The proportion of patients who needed invasive ventilation did not differ among the two groups, and overall, the researchers found that 34 patients who received convalescent plasma, or 15%, had died — compared with 31 who were given standard care, or 14%.

Dozens of hospitals poised to defy FDA's directive on Covid plasma

The study had some limitations, including that it was an “open label design” so the physicians treating the patients knew who was given convalescent plasma and who wasn’t. Additionally, more research is needed to determine whether similar findings would emerge among a larger group of patients in other parts of the world.

Simon Clarke, an associate professor in cellular microbiology at the University of Reading in the United Kingdom, called the new study “a blow” to the use of convalescent plasma as a Covid-19 treatment.

“While this is a blow to the use of plasma therapy for Covid-19, it should not be abandoned, there may be ways to refine it as a treatment and deliver solid, demonstrable benefits,” Clarke said in a written statement distributed by the UK-based Science Media Centre.
Researchers hope this old-fashioned treatment will work for coronavirus

“Use of someone’s blood plasma that contains antibodies against a virus or bacteria to treat an infection in someone else, is not a new technology and although usually safe, is not entirely without risk,” said Clarke, who was not involved in the new study.

“The PLACID trial was able to show a small effect on the rate at which patients were able rid themselves of the virus, but this

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Rural living, chronic illness and COVID-19

PRAIRIE, Miss. (AP) — COVID-19 hit Prairie native Shirley Judd suddenly and hard. One day in late August, she felt fine; the next, she could barely move.

As soon as the symptoms struck, Judd called her aunt to take her to West Point to see a doctor, where she tested positive for COVID-19.

“When I got home, I had to go straight to bed. I couldn’t even sit up or do anything. I had headaches starting off, and I was just shaking, throwing up,” Judd said. “After about four days, or five, that’s when my throat got so sore I couldn’t swallow. I couldn’t eat anything.”

She visited another doctor in Houston on Labor Day and received shots and antibiotics. By Wednesday, her condition worsened. She was losing weight, and her mouth was swollen. At approximately 8 a.m., she checked into the North Mississippi Medical Center in Tupelo for treatment.

What made Judd’s experience more harrowing was that she has multiple sclerosis, a chronic illness that affects the central nervous system. Judd is 53 and has been on disability for the condition since 1987. She has had two hip replacements because of MS, and changes treatments every two years. She receives infusion treatments every six months and thought her initial illness resulted from MS flaring rather than a COVID-19 diagnosis.

The Centers for Disease Control and Prevention have long said people with underlying medical conditions and older adults are at increased risk for severe illness from COVID-19. While the National Multiple Sclerosis Society website states that current evidence suggests MS doesn’t increase the risk of dying from the COVID-19, possible long-term consequences of MS, age and higher levels of disability can increase the risk of being hospitalized for COVID-19.

Judd’s primary concern was maintaining her household while recovering, and she’s grateful family members stepped in to help. Family friend Lee Thomas did most of her cooking and cleaning, and cousins Yolanda Ewing and Chris Ewing helped bring supplies and food to her.


“Everything and everybody was really good about helping me out until I got straightened out and could get around,” Judd said. “That was a blessing.”

Judd also received financial support from Okolona-based nonprofit Excel Inc. by applying for the COVID-19 Support Fund, which is available to people affected by COVID-19. The organization paid her water and light bills while she was recovering.

“With Excel, I appreciate what they did because at the time, I couldn’t do anything,” Judd said. “It was a blessing and a miracle.”

Judd is also Black and lives in a rural community, both factors the CDC claims might require extra precautions against COVID-19. As of Oct. 11, Black Chickasaw residents of Non-Hispanic and unknown ethnicity were 49% of Chickasaw’s 777 cases since March 11, according to the Mississippi State Department of Health. The U.S. Census Bureau estimates Black people are approximately 45% of Chickasaw’s population. Statewide, Black people account for 48% of COVID-18 cases as of Oct. 4, despite only representing 38% of the

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How Traditional Chinese Health Beliefs and Chinese Culture Influence Health and Illness?

Traditional Chinese health beliefs adopt a holistic view emphasizing the importance of environmental factors in increasing risk of disease. According to Quah (1985), these factors influence the balance of body’s harmony, yin and yang. These are two opposite but complementary forces and, together with qi (vital energy), they control the universe and explain the relationship between people and their surroundings. Imbalance in these two forces, or in the qi, results in illness.

In order to restore the balance, traditional remedial practices may be needed. For example, excess `hot’ energy can be counterbalanced by cooling herbal teas, and vice versa. These beliefs are deeply ingrained among the Chinese, and have been found to be unchanged following migration to Singapore.

Lee, et. al. (2004), found that patients with specific chronic diseases, namely arthritis, musculoskeletal diseases and stroke, were more likely to use Traditional Chinese Medicine (TCM). This was strongly determined by the ‘chronic disease triad’, perceived satisfaction with care and cultural health beliefs.

Hence the use of TCM is not associated with the quality of doctor-patient interaction. Astin (1998) also agreed that it was seen as being more compatible with the patients’ values, spiritual and religious philosophy, or beliefs regarding the nature and meaning of health and illness.

In traditional Chinese culture, taking medication is thought to be aversive, hence medications tend to be taken only until symptoms are relieved and then discontinued; if symptoms are not obvious, medications will probably never be taken.

Apart from parental cultural beliefs, minor side effects of certain antibiotics such as stomach upset may contribute to the poor adherence of medication. The use of “leftover”, “shared” antibiotics and over-the-counter purchase of antibiotics by parents are common situations in the community.

They think that their children suffer from the same illnesses judging by the similar symptoms, so they would give the “leftover” or “shared” antibiotics to their children and only bring them to their doctors if there is no improvement (Chang & Tang, 2006). This may cause their conditions to deteriorate and may necessitate aggressive treatments later which may have unnecessary side effects.

However, there are small groups of Chinese who also blamed ill-health or misfortunes on supernatural forces, or on divine retribution, or on the malevolence of a ‘witch’ or ‘sorcerer’ (Helman, 1994). Such groups will usually seek cures from their religions.

In Singapore, the Ministry of Health has drawn up the TCM Practitioners’ Ethical Code and Ethical Guidelines to prevent any unscrupulous practitioners from preying on their patients and taking advantage of their beliefs, for example, molesting ignorant patients.

The degree of acculturation has been evidenced in the following case. An old man was brought into our hospital with a week-long history of malaise, nausea and vomiting, and sudden jaundice. He was diagnosed to have an obstructive mass in the liver.

A biopsy revealed hepatocellular carcinoma. The serological test suggested chronic active hepatitis B. When the news broke to his son that his father had cancer, he requested not to disclose that to his father.…

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Midcoast Lyme Illness Assistance And Education

PeaceHealth is a not-for-profit wellness care technique with medical centers, crucial access hospitals and medical clinics located in Washington, Oregon and Alaska. Holding this entitles you to provisional registration with the Common Health-related Council, subject only to its acceptance that there are no Fitness to Practise concerns that want consideration. Healthcare facilities across the nation are now experiencing a essential shortage of tiny-volume intravenous (IV) fluids, which impacts the supply of IV antimicrobials.

Parmi ces onze vaccins inscrits dans le calendrier vaccinal pour la vaccination universelle des nourrissons trois sont actuellement obligatoires (diphtérie, tétanos, poliomyélite) et huit sont recommandés 1. The field of health-related anthropology examines the methods in which culture and society are organized about or impacted by problems of health, health care and related concerns.

Every single doctor will assess his or her care of individuals utilizing proof-based quality indicators. They know and I know that ‘patient very first care’ is never ever a element of that sentence. In their effort to lessen charges, they – starting with Medicare – have systematically held main care reimbursements low but added excessive nonclinical operate requirements.

Early research suggested that high quality was enhanced and costs decreased with the advent of hospitalist care. Like internal medicine, there are a lot of pediatric subspecialties for particular age ranges, organ systems, disease classes, and internet sites of care delivery.

We’ve devised objective metrics for success that include improvements in patient and provider satisfaction as well as reductions in total medical expense. Whilst technically, the homeopathic treatment may possibly not kill, withholding genuine healthcare therapy from a child for a month, whilst expecting mere water to cure definitely can.…

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