By Serena Lawrence: Complete Post through this link…

When I was diagnosed with pulmonary hypertension, I learned that it was a rare disease. I had never heard of pulmonary hypertension before my diagnosis, and I learned that none of the people in my life knew about the disease either.

For those who might want, or need, to know, here are some points to keep in mind:

1. Pulmonary hypertension is different from asthma.

A few of my friends tried to sympathize with me when I was diagnosed with pulmonary hypertension by saying, “I understand how you feel. I have asthma.”

I’ve had asthma attacks, to the point where I was hospitalized for a week. From my experience, asthma and pulmonary hypertension are very different diseases, even though they both cause breathing problems.

I am not trying to downplay the severity of asthma. Asthma can be a very dangerous disease, but generally, in my experience it has been a manageable disease.

2. My lifestyle and diet didn’t cause pulmonary hypertension.

Most people know what regular hypertension is. Most people do not know what pulmonary hypertension is, and how it differs from regular hypertension.

I found that after diagnosis, many people thought I had done something “wrong” to cause my pulmonary hypertension.

Some thought my diet must have been bad, others asked if I smoked. (I never smoked a day in my life and was a vegetarian who tried to eat mostly healthy foods when I was diagnosed.)

And More…

From University of Cambridge: Complete Post through this link…

Experts urge immediate mental health assistance for patients with autoimmune diseases.

Over 50% of patients with autoimmune disorders suffer from mental health issues like depression or anxiety. However, most of these patients are seldom, if ever, questioned about these symptoms in clinical settings, according to recent research from the University of Cambridge and King’s College London.

A recent study published in the journal Rheumatology indicates that a significant portion of these patients infrequently or never disclose their mental health concerns to medical professionals. Additionally, the spectrum of potential mental and neurological symptoms is broader than previously thought.

The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety, and depression. Among the patients in the study, experience of most of these symptoms was very widespread.

55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.

The mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.

Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.

By BEN LEONARD: Complete Post through this link…

The Biden administration is going after health insurers for flouting a federal law requiring them to provide mental health care on the same terms as other care.

The administration has proposed new rules it says will make the insurers comply and it’s threatening big fines if they don’t. Insurers are pleading innocent and, backed by some of America’s biggest companies, claiming the Biden administration plan could make an intractable problem worse.

The battle comes as Americans’ mental health care needs are at modern highs, following a pandemic-driven spike that refuses to abate.

“We always hope for collaboration, but the rule has sticks as well,” Neera Tanden, head of President Joe Biden’s domestic policy council, told POLITICO. “We hope insurers will change their behavior going forward without the sticks, but we will continue to fully enforce the parity law.”

Those sticks include fines of $100 per policyholder per day if insurers don’t close loopholes the administration says they’re using to limit what they pay for mental health care. The administration says those ploys include requirements that doctors seek insurers’ approval before delivering care, lower reimbursement rates for providers who treat mental illness and deliberate efforts to limit the number of in-network physicians available to patients.

by Jen Soriano: Complete Post through this link…

Activist Jen Soriano brings to light the lingering impacts of transgenerational trauma and uses science, history, and family stories to flow toward transformation in this powerful collection that brings together the lyric storytelling, cultural exploration, and thoughtful analysis of The Argonauts, The Woman Warrior, What My Bones Know, and Minor Feelings.

The power of quiet can haunt us over generations, crystallizing in pain that Jen Soriano views as a form of embodied history. In this searing memoir in essays, Soriano, the daughter of a neurosurgeon, journeys to understand the origins of her chronic pain and mental health struggles. By the end, she finds both the source and the delta of what bodies impacted by trauma might need to thrive. In fourteen essays connected by theme and experience, Soriano traverses centuries and continents, weaving together memory and history, sociology and personal stories, neuroscience and public health, into a vivid tapestry of what it takes to transform trauma not just body by body, but through the body politic and ecosystems at large.

By Eleanor J. Bader: Complete Post through this link…

Deaf educator Rachel Zemach calls language “the ultimate gift.” Whether we have the ability to communicate through speech, sign language, typing or writing, having a way to convey our opinions and thoughts — and ask questions — connects us to information, companionship, friendship and community.

But these tools are not always available to Deaf students. In fact, when Zemach became an elementary school teacher in a California public school in 2003 (a position she held until 2013), she discovered that her Deaf special education students had not been taught American Sign Language (ASL). They also lacked the ability to read and write.

She blames this on audism, which she defines in her recently released memoir, The Butterfly Cage, as “a discriminatory attitude toward deafness, created by discriminatory attitudes toward disability, fear of the unfamiliar, and simple ignorance.”

The impact of audism, she explains, is devastating. Likewise, the systemic failure to educate Deaf kids. This, she writes, leads to extremely high dropout rates, social isolation and subsequent unemployment.

Especially maddening, she explains, is that it does not have to be this way.

By Sharon Saline, Psy.D.: Complete Post through this link…

Children and teens with ADHD are often targeted by bullies who notice their impulsivity, clumsiness, or awkward social skills. Here, teach your child how to deal with a bully and become an upstander for other neurodivergent kids.

Sadly, many neurodivergent kids experience bullying, teasing, and/or taunting. Despite anti-bullying policies in schools and national efforts to raise awareness, kids with ADHD will likely find themselves as victims and/or aggressors at some point.

Yes, aggressors. Children and teens with ADHD may not realize when they’ve crossed the line from gentle ribbing into full-on bullying. Teasing is:

• often done with humor
• is reciprocal
• doesn’t affect self-esteem
• will stop when it is no longer fun

Taunting, on the other hand, involves ill will and continues or even escalates after the recipient is hurt or asks for the taunting to stop. Taunting is a form of bullying, and it is rampant in the upper elementary school grades, middle school, and early high school years.

Bullies often target individuals they perceive to be weak, vulnerable, and unable to defend themselves. It is repetitive, purposeful, and meant to cause harm or fear through the threat of further hostility. Bullying can be physical (hurting people), or it can be done through relational aggression (starting rumors, spreading gossip, and getting people to “gang up” on others).

By Kathleen Romig: Complete Post through this link…

A newly reintroduced bill would provide relief for low-income older and disabled beneficiaries of Supplemental Security Income (SSI), who face the strictest savings limits of any federal program. At no more than $2,000 for individuals (and $3,000 for couples, essentially a marriage penalty), those asset limits aren’t enough to weather an emergency, let alone provide stability or save for the future.

The bipartisan bill, from Sens. Sherrod Brown and Bill Cassidy and Reps. Brian Higgins and Brian Fitzpatrick, would raise the limits to $10,000 for individuals and $20,000 for couples, improving beneficiaries’ well-being. The bill would also improve program administration, reducing churn and strain on an underfunded Social Security Administration (SSA).

Because the current limits aren’t indexed to inflation and have been updated only once in over 50 years, their value erodes each year. They now stand at only one-fifth of their 1972 value. (See infographic.)

From The Conversation U.S.: Complete Post through this link…

The health of people with diabetes, hypertension and obesity improved when they could get free fruits and vegetables with a prescription from their doctors and other health professionals.

We found that these patients’ blood sugar levels, blood pressure and weight improved in our new study published in Circulation: Cardiovascular Quality and Outcomes.

The improvements we saw in clinical outcomes could have a meaningful impact on overall health. For example, systolic blood pressure, or blood pressure during heartbeats, decreased more than 8 millimeters of mercury, or mm Hg, while diastolic blood pressure, or blood pressure between heartbeats, decreased nearly 5 mm Hg. For context, this is about half the drop gained through medications that lower blood pressure.

Many U.S. health care providers have been experimenting with “ food is medicine “ programs, which provide free, healthy food to patients — sometimes for a year or more.

From DREDF: Complete Post through this link…

If testers are stripped of standing, the result will be less private enforcement of the ADA, a less accessible society, and the continued exclusion of people with disabilities from community life.

ighteen leading disability advocacy organizations have filed a “friend-of-the-court” brief in the U.S. Supreme Court in Acheson Hotels v. Laufer, a case that will decide whether testers – disabled people who investigate compliance with the Americans with Disabilities Act (ADA) – have the ability to sue businesses for discrimination when their rights under that law are violated. The case is scheduled to be heard on October 4, 2023.

Civil rights testing – intentionally investigating and challenging discrimination – has been used as an effective tool of enforcement since the 1950s, helping ensure that public accommodations were integrated and housing discrimination, challenged. Congress included the same enforcement tools when it passed the ADA in 1990 that it had included in these earlier civil rights laws, and testing has proven to be an essential enforcement tool in this context as well.

Deborah Laufer is one such tester. She is a person with disabilities who has filed numerous cases against hotels for violating an ADA regulation that requires hotels to include certain information about accessibility features in their online reservation systems. Ms. Laufer is a “tester” in her cases because she voluntarily puts herself in a situation to experience discrimination – specifically, she visits hotel websites to investigate compliance with the reservation rule – and when denied the information to which the ADA regulations entitle her, she challenges that discrimination in court and seeks to make the hotels comply with the law.

Despite acknowledging that they were, in fact, violating the ADA, hotelier Acheson doesn’t think that tester standing is fair, and argues that people like Ms. Laufer should have an immediate plan to stay at a hotel before they can challenge the hotel’s discrimination. Acheson asks the Supreme Court to reverse a First Circuit opinion upholding discrimination claims brought against them by Ms. Laufer as a tester.

The brief of amici opposes Acheson’s request and defends testing as essential to the enforcement of the ADA, arguing that eliminating tester standing would frustrate the ADA’s goal of equality of opportunity. Amici discuss how the indignity of unequal treatment has long been recognized as the sort of harm that can be remedied in court and explains how an individual’s motive, or status as a tester, does not change that. Amici also dispel a number of false claims made by Acheson and its supporters about ADA litigation.

“If individuals with the fortitude to take on the burden of ADA litigation as testers are stripped of standing, the result will inevitably be less enforcement of the ADA, frustration of its goals, and the continued exclusion of people with disabilities from community life,” said Michelle Uzeta, Deputy Legal Director of amicus Disability Rights Education and Defense Fund.

by John Gever: Complete Post through this link…

Study suggests 10% of cases may have easily treatable cause.

A substantial minority of patients diagnosed with fibromyalgia at one medical center in Southern California had “consistently low” levels of alkaline phosphatase (ALP), researchers said, which could have accounted for their symptoms.

Among 611 presumed cases of fibromyalgia, 57 (9.3%) had three or more consecutive ALP measurements below the reference range’s lower limit of 37 U/L, according to Christina Downey, MD, of Loma Linda University in California, and colleagues.

None of the 57 had undergone genomic analysis or other testing for hypophosphatasia (HPP), the clinical syndrome caused by ALP deficiency, suggesting that it had escaped clinicians’ notice at the time, the researchers reported in ACR Open Rheumatologyopens in a new tab or window. But many of them probably did have the condition, as 25 had a history of fractures despite a relatively young age (averaging 52 years old).

What makes the finding of probable HPP important is that, besides decreased bone density, its symptoms include chronic muscle and joint pain like that seen in fibromyalgia. Moreover, ALP levels can be normalized easily with asfotase alfa (Strensiq), an enzyme replacement therapy.

“The availability of medical treatment for HPP is perhaps the most pressing reason to identify these patients correctly,” Downey and colleagues wrote. “Due to the potential clinical consequences that stem from the misdiagnosis of HPP, we urge clinicians to consistently screen for HPP.”