What It’s Like Living with Lupus

http://bit.ly/2JyiAdz

It’s hard to convey to people how I’m feeling and what the practical consequences are. Writing this is painful. I feel stalked by shame when I have to explain why I can’t go out in the evening because I’ll be overcome by fatigue, or why I can’t sit in the sun because I’m photosensitive and the sun makes my joints ache.

This afternoon, I’m contemplating the bruises on my legs, the latest manifestation of my malfunctioning immune system. In December 2017, I was diagnosed with antiphospholipid syndrome, a blood-clotting disorder that rapidly escalated the urgency of my previous lupus diagnosis. The bruises aren’t because of the disease, which just causes clots and strokes and whatnot. The bruises are about the anti-clotting medication.

They appear from nowhere. The other day, I was quietly writing and a huge welt came up on my thumb. I did nothing to provoke it, but there it appeared, red-brown and glowing.

Rumored Amazon Pilot Would Target Hospital-to-Home Transitions

http://bit.ly/2zMo18N

Two health systems are reportedly working with Amazon (Nasdaq: AMZN) and a startup called Xealth, with plans to launch a pilot program that could ease patients’ transition between hospital and home.

“The idea behind the pilot, which is still under review and is slated to start in a matter of months, is to provide patients discounted easy access to the medical supplies and other goods they need via Amazon Prime,” wrote CNBC’s Christina Farr, who first reported the story last week. “Those who do not have a Prime membership or do not want to use Amazon would still be able to access the pilot via other e-commerce providers.”

The pilot would involve Seattle-based Providence Health Systems and the University of Pittsburgh Medical Center (UPMC). Both have invested in a startup called Xealth, which has specialized in making digital tools and resources available to patients, supporting health system efforts to monitor and manage care.

Xealth would spearhead this new pilot, with Amazon providing guidance on setting up the bundles of goods and the reseller accounts, Farr reported, citing unnamed sources familiar with the effort.


FDA updates warnings for fluoroquinolone antibiotics on risks of mental health and low blood sugar adverse reactions

http://bit.ly/2LpuxUu

The U.S. Food and Drug Administration today is requiring safety labeling changes for a class of antibiotics called fluoroquinolones to strengthen the warnings about the risks of mental health side effects and serious blood sugar disturbances, and make these warnings more consistent across the labeling for all fluoroquinolones taken by mouth or given by injection.

FDA-approved fluoroquinolones include levofloxacin (Levaquin), ciprofloxacin (Cipro), ciprofloxacin extended-release tablets, moxifloxacin (Avelox), ofloxacin, gemifloxacin (Factive) and delafloxacin (Baxdela). There are more than 60 generic versions. The safety labeling changes the FDA is requiring today were based on a comprehensive review of the FDA’s adverse event reports and case reports published in medical literature.

Across the fluoroquinolone antibiotic class, a range of mental health side effects are already described in the Warnings and Precautions section of the drug labeling, but differed by individual drug. The new class-wide labeling changes will require that the mental health side effects be listed separately from other central nervous system side effects and be consistent across the labeling of the fluoroquinolone class. The mental health side effects to be included in the labeling across all the fluoroquinolones are disturbances in attention, disorientation, agitation, nervousness, memory impairment and delirium.

Additionally, the recent FDA review found instances of hypoglycemic coma where users of fluoroquinolones experienced hypoglycemia. As a result, the Blood Glucose Disturbances subsection of the labeling for all systemic fluoroquinolones will now be required to explicitly reflect the potential risk of coma with hypoglycemia.


Two Experimental Drugs Reduce Infections in the Elderly

http://bit.ly/2uu9ycD

Despite the treatment being given for only six weeks, the positive effects lasted for a year.

Acombination drug therapy that inhibits the TORC1 pathway involved in immune responses boosted the health of people 65 years and older, according to research published in Science Translational Medicine yesterday (July 11). 

“This study is the first step to suggest we may be able to target some of the fundamental pathways contributing to aging to promote healthy aging, including healthy immune function, in older people,” coauthor Joan Mannick, the chief medical officer at resTORbio, Inc, tells WBUR.

After a year, the researchers found that subjects who received the combination therapy showed a 40 percent reduction in colds and respiratory infections. Additionally, the drugs augmented the body’s response to a flu vaccine by producing 20 percent more antibodies against the influenza virus.

“Perhaps the most exciting aspect of the results is that the protection lasted for the duration of the study, namely a year, even though the drug was only given for the first six weeks,” Aubrey de Grey, who studies aging at the SENS Research Foundation and was not involved in the study, tells WBUR

Given that respiratory infections and susceptibility to flu are both major issues for older people, these results are quite promising, according to The Guardian


Rheumatic Adverse Events on the Rise with Cancer Therapies

http://bit.ly/2Lorxru

The spectacular success and rapidly widening use of the immune checkpoint inhibitors in the treatment of cancer has been accompanied by a notable increase in rheumatic immune-related adverse events.

"What the immune checkpoint inhibitors do -- ramping up the immune system through enhancing T cell activity -- is the exact opposite of what we do, which is to suppress the immune system to treat our diseases," he explained.

Multiple rheumatic phenotypes for these adverse events have now been reported and virtually every organ has been affected, with cases of skin rash, colitis, hepatotoxicity, pneumonitis, ocular and renal involvement and even hypophysitis, which was almost unheard of in the past.

What will be required is understanding the balance required between the immune activation needed to control the cancer and the immune suppression that manages the rheumatic disease, he said.


New Trick in DNA Editing Could Unlock Thousands of Cures

Narrower change+Lower Risk...

http://bit.ly/2NR5lYN 

A CRISPR startup rewrites tiny mutations instead of cutting and pasting entire genes.

For all its promise to cure disease, the gene-editing tool known as CRISPR still has a lot of unknowns. A big one is its safety: will it edit only the places in the genome it’s supposed to?

Perhaps the most contentious claim about CRISPR, that it could cause hundreds of unintended edits throughout a genome, has since been retracted. Even so, scientists still worry it could cause some unwanted DNA insertions or deletions. Other recent research indicates that some versions of CRISPR could make edited cells more vulnerable to cancer.

Such problems could be avoided with a more precise technique being developed in the labs of David Liu, a professor at Harvard and the Broad Institute. His team’s version of CRISPR involves so-called base editors, which go after much smaller targets — individual letters of DNA.


Cancer Vaccine Works 'Startlingly Well' in Mouse Mode

https://wb.md/2L4iPyl

An experimental cancer vaccine has demonstrated dramatic results in mice with many different cancer types and distant metastases and is now to be tested in patients with cancer.

According to researchers at the Stanford University School of Medicine in California, 87 of 90 mice were cured of cancer, and among the 3 animals that experienced a recurrence, the tumors once again regressed after a second treatment.

The results were observed in mice with breast, colon, and melanoma tumors and lymphoma.

The study used an approach called in situ vaccination. With this strategy, immuno-enhancing agents are injected locally into one site of tumor, which in turn triggers a local T cell immune response that will then attack the cancer cells in the rest of the body.

How The US Military Reinvented Trauma Care And What This Means For US Medicine

http://bit.ly/2L5RU5l

 As we honor the men and women who have served our nation in uniform, it is also worth recognizing the US military’s complete transformation of trauma care over the past 17 years of continuous military operations. This transformation, and the resulting decline in death and disability rates, deserves to be recognized as one of the most remarkable achievements in the history of US medicine.

In the civilian world, it takes 17 years on average for a new discovery to change medical practice. By contrast, the US military developed, fielded, or dramatically expanded more than 27 major innovations in little more than a decade over the course of the wars in Iraq and Afghanistan. As a result, the death rate from battlefield wounds decreased by half, to the lowest level in the history of warfare.

Reinventing Front-Line Care

Working with a research budget 1/30th the size of that of the National Institutes of Health, the Department of Defense (DoD) identified, prioritized, and funded high-impact combat casualty research to meet its most pressing needs and push new products to the field. To counter the rising toll of casualties from improvised explosive devices, the DoD supplied redesigned tourniquets to front-line soldiers and marines to help them stop life-threatening bleeding quickly and effectively. Surgical teams were positioned far forward to resuscitate critically injured warriors with a balanced mix of blood products and perform “damage control surgery” (which focuses on threats to life and defers definitive repairs until later).

To transport severely injured casualties, the military trained its MEDEVAC helicopter crews to provide advanced life support and often supplemented them with en route critical care nurses. Rather than keep wounded troops in-country until they were “stable enough to fly” as was done in Vietnam, the Air Force converted returning C-17s and other transport aircraft into “flying ICUs” staffed by specially trained critical care air transport teams. These efforts allowed for the rapid evacuation of critically ill and injured service members to Landstuhl Medical Center in Germany, then to the United States. These new transport procedures were so effective that it was not unusual for a warrior wounded in a remote province of Iraq or Afghanistan to reach Walter Reed or another US medical center within 48–72 hours of injury. The in-flight mortality rate on these transports was an astonishingly low 0.25 percent. Once back in the US, wounded troops received multiple surgeries and early and skilled rehabilitative care, assisted by new technologies designed to improve survival and enhance recovery from the invisible and visible wounds of war.

Thriving with Vision Loss: Introducing the APH ConnectCenter

http://bit.ly/2NxaSTR

“Your site has been an invaluable resource for my family and myself. I am so thankful that you guys take the time to compile information for families that would be impossible to find elsewhere.” - A parent speaking of FamilyConnect

A mother gets tips on how to help her preschool daughter who is blind make friends.

Teenage boy reading braille & smiling in front of a tactile map
A father whose son is low vision reads articles written by another parent with similar experiences.

A rehabilitation counselor watches his student's confidence grow in mock job interviews.

A senior who is worried about life with recent vision loss finds reassuring information written in Spanish, her native language. 

Continuing the Legacy of Independence through Information
In February 2018, the American Foundation for the Blind (AFB) and the American Printing House for the Blind  (APH) announced a historic partnership with  the mutual goal of improving the lives of children and adults who are blind or visually impaired. As of July 1, this partnership has taken effect.

APH has now become the steward of several key information resources founded by AFB. The goal is to ensure the continued impact of these critical sources of information. AFB is taking its work to a new level by investing in policy and programs focused on creating a more inclusive, accessible society for people with vision loss.

Introducing the "APH ConnectCenter"
Building on decades of work by AFB, APH has now grouped these resources that cover every aspect of life under the name the APH ConnectCenter. The APH ConnectCenter includes:

FamilyConnect.org - gives parents of children who are visually impaired a place to find resources and support each other.

CareerConnect – provides employment information, career-exploration tools, and job-seeking guidance for individuals with vision loss and professionals who work with them.

VisionAware.org – helps adults who are losing their sight continue to live full and independent lives by providing timely information, step-by-step daily living techniques, and a supportive online community.

BrailleBug.org – teaches children about braille through games and activities and provides resources to teachers and parents.

APH ConnectDirect - this information and referral 800 number provides information by phone on virtually any topic related to visual impairment and blindness. Dial toll-free 1-800-232-5463. You may also submit questions by email atinfo@aph.org.


The “Smart Kid Disorder” You’ve Never Heard of

I was hyperlexic when I was young; also, obsessed with reading....

http://bit.ly/2KPHR4c

We rely on our children’s pediatricians in the early years when we have a question, their teachers for information when we can, and when all else fails, we turn to the internet. I, myself, have typed into a search bar looking for answers on many occasions. “How can I get my toddler to sleep through the night? How can I get my toddler to eat a vegetable? How is it possible that my toddler just read me a book?” Well, I guess that last one isn’t typical, but it is a question that I have had to Google before. It is a question that quite a few parents have had to Google, actually, and we all have something in common: our kids have Hyperlexia.

I am guessing you have never heard of Hyperlexia. Neither had we, until we stumbled upon blogs by other parents and a few journal articles written by a handful of doctors and researchers who took an interest in it. Hyperlexia is complicated, but a good general way to describe it is a precocious reading ability and an intense fascination with letters and numbers that is accompanied by issues comprehending verbal language. Hyperlexic kids have extremely strong visual and auditory memory which they use to break down TV shows, conversations, music, anything to learn something new. Often, they can recite shows they have seen or books that have been read to them verbatim after being exposed to it once or twice. This act is called “echolalia” and is one theory surrounding the idea of how they teach themselves to read, some as young as two years old. (Bainbridge, “If my Toddler”). Hyperlexia is in the Diagnostic and Statistical Manual of Mental Disorders (also referred to as the DSM), but not as a diagnosis. In this manual, which is basically the Bible of disorders, it is characterized as a splinter skill of children with autism. But, a lot of our kids don’t have autism. My son has had two separate evaluations to prove it.

According to Dr. Darold Treffert, who is a leading expert on Hyperlexia, there are three different types. Type 1: Neurotypical children who read early. Type 2: Children with autism who have Hyperlexia as a splinter skill. Type 3: Children without autism who read early, but have some autistic-like traits that fade over time. (Treffert, “Oops! When autism”). If a disorder is not considered a diagnosable disorder in the DSM, it doesn’t technically exist and doesn’t get diagnosed. Hyperlexic kids often have sensory issues and autistic-like traits that require early intervention, but these services are hard or impossible to get without a diagnosis. Not to mention the fact that it is hard for doctors and educators to help your child with hyperlexic issues when they have no idea what that means. Hyperlexia needs to be added into the DSM as a stand-alone diagnosis so that hyperlexic kids who do not have autism, can get the help they need to foster their strengths and overcome their challenges.