Namiaz http://namiaz.org/ Wed, 21 Sep 2022 06:54:12 +0000 en-US hourly 1 https://wordpress.org/?v=5.9.3 https://namiaz.org/wp-content/uploads/2021/06/icon-7-150x150.png Namiaz http://namiaz.org/ 32 32 Sleep Deprivation or Narcolepsy? UAE doctors say rare diseases go undetected https://namiaz.org/sleep-deprivation-or-narcolepsy-uae-doctors-say-rare-diseases-go-undetected/ Wed, 21 Sep 2022 06:08:21 +0000 https://namiaz.org/sleep-deprivation-or-narcolepsy-uae-doctors-say-rare-diseases-go-undetected/

Doctors in the United Arab Emirates say a rare sleep disorder that causes a person to suddenly fall asleep at inappropriate times is going undetected in the country as it marks World Narcolepsy Day – an annual day of awareness to bring overlooked life into to take the limelight. Change in neurological condition.

Narcolepsy affects 50 in every 100,000 people worldwide, yet there are few figures to indicate its prevalence in the UAE.

For the latest headlines, follow our Google News channel online or via the app.

dr However, Shobhit Sinha, Specialist in Neurology at NMC Royal Hospital – Khalifa City, Abu Dhabi, estimates the prevalence in the Emirates to be between 30 and 50 people per 100,000.

“The diagnosis is often missed and/or delayed by more than a decade because it overlaps with symptoms of other conditions such as seizures, psychiatric disorders, insomnia and sleep apnea,” he told Al Arabiya English.

Symptoms include sleep attacks, daytime sleepiness, nightmares, hallucinations, and cataplexy—temporary muscle weakness in response to emotions. It’s often caused by an autoimmune reaction — that’s when antibodies are released by the body, but instead of destroying disease, they attack healthy cells.

“There are five main symptoms of narcolepsy, denoted by the acronym CHESS {cataplexy (is the sudden, generally brief (

“While all patients with narcolepsy experience excessive daytime sleepiness, they may not experience all five symptoms.”

In narcolepsy, antibodies attack areas of the brain that produce a sleep-regulating chemical. There is currently no cure, but sometimes the condition can be managed with regular naps, a healthy diet, and exercise.

In some cases, medications such as antidepressants or stimulants can also help.

“Narcolepsy can be treated in a number of ways,” said Dr. sinha

“First, behavioral education for patients, family and friends. Also, sleep hygiene and cognitive behavioral therapy are techniques aimed at behavioral management of narcolepsy symptoms, such as: and treatment of psychosocial effects through self-help groups.”

“There are also specific drugs to treat symptoms of narcolepsy, such as drugs for cataplexy, stimulants for excessive daytime sleepiness, and antidepressants for sleep paralysis and hallucinations.”

Living with narcolepsy can be difficult, the doctor said.

“People with narcolepsy can suffer from mental fog, poor memory, anxiety, phobias and depression. In addition, an increased prevalence of cardiovascular and cardiometabolic diseases such as hypertension, obesity, diabetes and hypercholesterolemia has been reported in people with narcolepsy. This can have a further impact on patients’ social and professional lives.”

“However, narcolepsy is a manageable condition, and almost anyone with narcolepsy can lead a fulfilling life. These challenges can be overcome by educating yourself, friends and family; medication compliance; Sleep hygiene and involvement in narcolepsy support networks.”

Emilia Saulle, a consultant neurologist at the Health Bay Clinic in Dubai, told Al Arabiya English that narcolepsy often goes undetected, saying the condition “can affect all aspects of daily life, including education, work, driving and relationships.”

dr Youssry Salah Shafiq Kerolos, a neurology specialist at Saudi German Hospital in Dubai, said the global incidence rate of narcolepsy is highest in a person’s second decade of life, often affecting teenagers and young adults.

“People with narcolepsy may wake up feeling rested, but then feel very sleepy for most of the day and may unintentionally fall asleep even when they’re in the middle of an activity, such as driving, eating, or talking,” he said. “Although there is no cure for narcolepsy, some of the symptoms can be managed with medication and lifestyle changes such as taking short naps, maintaining a regular sleep schedule, avoiding caffeine before bed, and exercising daily.”

dr Kerolos said that if left undiagnosed or treated, narcolepsy can impair psychological, social and cognitive functioning and development, and interfere with academic, professional and social activities, and patients are more likely to be involved in car accidents.

“Suddenly falling asleep or losing muscle control can turn normally safe actions, like walking down a long flight of stairs, into danger,” he said.

Continue reading:

UAE doctors warn of the spread of infection and disease as children return to school

IV Drip Therapy: UAE experts say no scientific evidence supports anti-aging benefits

Afraid of needles? Inhalable COVID-19 vaccine shows promise in new study

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Texas Tech project to combat misinformation in Hispanic communities https://namiaz.org/texas-tech-project-to-combat-misinformation-in-hispanic-communities/ Mon, 19 Sep 2022 22:37:00 +0000 https://namiaz.org/texas-tech-project-to-combat-misinformation-in-hispanic-communities/

LUBBOCK, Texas (KCBD) – Three Texas Tech faculty members are trying to combat the misinformation and disinformation among the Hispanic population. They are trying to understand why the Hispanic community lacks so many sources of information compared to other communities.

Lucinda Holt is an Assistant Professor of Practice at Texas Tech’s College of Media and Communication. She said this project is important because of the growth in the Latino population.

“And there’s not a lot of information in Spanish,” Holt said.

The lack of Spanish resources plays a large role in the communities’ perception of health.

“We’ve heard from people that they get most of their information from social media, particularly Facebook,” Holt said. “Many of them don’t have access to local news at home or they only hear what their family members are telling them.”

Misinformation and disinformation had fatal consequences. During their research, they spoke to a Plainview man who was hospitalized for COVID-19.

“He also knew a 23-year-old who died because he believed the COVID-19 vaccine was bad for him. And so he decided not to get vaccinated,” Holt said.

Holt said the first step in combating misinformation is to increase representation.

“So we need more Latinos, more Hispanos. And again it goes beyond the language. We need more Hispanos and Latinos,” Holt said. “You know, stand in front of the camera. Don’t be shy and share this message.”

Along with Holt, Kent Wilkinson, professor at the College of Media & Communication, and Ryan Litsey, associate dean of user-centric services at Texas Tech University Libraries, all take it upon themselves to solve this problem.

“We will take this information and start production. So that’s print, so TV, radio, we’re looking at social media, and we’re going to produce Spanish-language content with English reinforcement,” Holt said.

This representation is also indispensable in crisis communication. She gave an example of the recent Uvalde shooting.

“The information in English is confusing but imagine if your child were in this building and you don’t speak English and you don’t get any communication in Spanish and you don’t know where to go, where to report anything with happens to your kid or where you can even find resources,” Holt said. “Crisis communication, so accurate communication, is critical to this project.”

You can find more information about the project at website here.

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One year in prison: We stand by #Xuebing https://namiaz.org/one-year-in-prison-we-stand-by-xuebing/ Mon, 19 Sep 2022 06:03:35 +0000 https://namiaz.org/one-year-in-prison-we-stand-by-xuebing/

China must protect the rights of imprisoned human rights defenders Huang Xueqin and Wang Jianbing

ISHR regrets that today marks a year of disappearance and imprisonment for two young Chinese defense lawyers. But we are inspired by their work and the spirit of solidarity among all those behind Xuebing.

“This case is based on nothing more than the Chinese authorities’ fear of an active, participatory society and kind-hearted people working to improve their country,” said Sarah M. Brooks, ISHR program director.

“Being charged with a national security crime based on online speeches and dinner parties? It would be ridiculous if we didn’t talk about a targeted campaign to repress civil society.’

As highlighted in previous campaigns by ISHR to call for the lifting of the RSDL or “residential surveillance in a specific place”, the practice of incommunicado detention – without access to a family or a lawyer of one’s choice – is evident and widespread in China . Whether formally RSDL or not, such practices violate international law and greatly increase the risk of torture and coerced confession.

In this case, too, it is clear that the authorities are deliberately using Xuebing’s detention to intimidate and silence other activists. Nevertheless, they continue to speak out. ISHR supports Huang Xueqin and Wang Jianbing by human rights defenders from China and Hong Kong, Taiwanese and Uyghur activists, students and human rights groups from around the world.

See the full text of the letter below and in French and Chinese.

___________

For publication: September 19, 2022

China must protect the rights of imprisoned human rights defenders Huang Xueqin and Wang Jianbing

Today, September 19, 2022, marks a year in prison for two young Chinese human rights defenders: Huang Xueqin, an independent journalist and key player in China’s #MeToo movement, and Wang Jianbing, a labor rights lawyer.[1]

We, the undersigned civil society groups, call on the Chinese authorities to respect and protect their rights in detention, including access to legal counsel, unrestricted communication with family members, their right to health and their right to physical autonomy. We emphasize that their detention is arbitrary and we call for their release and that the authorities allow them to carry out their work and make important contributions to social justice.

Who are you ?

In the 2010s Huang Xueqin worked as a journalist for mainstream media in China. During this time she reported on issues of public interest, women’s rights, corruption scandals, industrial pollution and problems of socially excluded groups. She later supported victims and survivors of sexual harassment and gender-based violence who spoke out as part of the #MeToo movement in China. On October 17, 2019, she was stopped by Guangzhou police and criminally detained in RSDL for three months for posting an article about Hong Kong’s anti-extradition movement online.

Wang Jianbing took a different path, but his story—like Huang’s—shows the commitment of young people in China to give back to their communities. He has worked in the non-profit sector for more than 16 years, dealing with issues such as education, disability, youth and work. Since 2018 he has been helping victims of occupational diseases to increase their visibility and access social services and legal assistance.

Arbitrary incommunicado detention

On September 19, 2021, the two human rights defenders were arrested by police in Guangzhou; After 37 days, they were officially arrested on charges of “inciting to undermine state power”. Under the pretense of COVID-19 prevention measures, they were held in solitary confinement and secretly interrogated for five months under conditions similar to “residential surveillance at a designated location” or RSDL. After months of delays and no guarantees of due process, her case made its way to court for the first time in early August 2022.

We strongly condemn Huang and Wang’s long terms. In a statement to the Chinese government in February 2022, six independent UN experts – including the Special Rapporteur on Human Rights Defenders and the Working Group on Arbitrary Detention (WGAD) – expressed serious concern about Wang’s disappearance and deprivation of liberty. They claimed that Wang’s activities were protected and legal, and that the Chinese authorities used a broad definition of “threatening national security” that contravened international human rights law.

In May 2022, the WGAD went a step further, formally declaring Wang’s detention “arbitrary” and urging the authorities to ensure his immediate release and access to justice. In light of other similar Chinese cases, the WGAD called on the Chinese authorities to conduct a full independent investigation into the case and take action to hold those responsible for rights violations accountable.

We repeat their appeal: The Chinese authorities should respect this UN finding and release Huang Xueqin and Wang Jianbing immediately.

Risks of torture and poor health

In addition to the lack of legal basis for their detention, we are also concerned about the detention conditions for Wang and Huang. Wang was held incommunicado under the pretense of “COVID-19 isolation,” and was subjected to physical and mental violence and abuse. His physical health deteriorated in part due to an irregular diet and inadequate nutrition, while he also suffered from physical and mental anguish and depression. UN and legal experts have identified similar risks in other Chinese detention practices – including RSDL – which may amount to torture and cruel, inhuman or degrading treatment. According to the United Nations Standard Minimum Rules for the Treatment of Prisoners (the “Mandela Rules”), prolonged solitary confinement – solitary confinement of more than 15 days – should be prohibited as it may constitute torture or ill-treatment.

Huang Xueqin’s detention conditions are even more worrying as no one, including a lawyer of her choice, was deprived of her liberty during the year – again without formal access to a lawyer or communication with her family – without notification of her situation. We are deeply concerned for their physical and mental health and reiterate that their incommunicado detention is a grave violation of international law.

Lack of guarantees for a fair trial

Given the circumstances, many brave Chinese lawyers may have stepped up to defend Huang Xueqin. But we are alarmed that Huang has been prevented from appointing a lawyer of her choice. In March 2022, her family stepped in and hired a lawyer on her behalf; she was not allowed to meet her client or see the case file. Despite this, that lawyer — with Huang’s approval, according to authorities — was fired after just two weeks. The right to legal counsel of one’s choice is not only a fundamental international human rights standard, but a right guaranteed by the criminal law of the PRC.

Dissuasive effect on the defense of rights

As is all too often the case in China, the authorities’ “investigation” into the Huang and Wang case had a concrete impact on civil society on a grand scale. Around 70 friends and acquaintances of the two defense attorneys from across the country were summoned by Guangzhou police and/or local authorities. Many of them were interrogated for up to 24 hours – some even several times – and forced to hand in their electronic devices. The police also forced and threatened some people to sign false statements admitting that they had attended training courses aimed at “undermining state power” and that simple social gatherings were in fact political gatherings for criticism to stir up in the government. The Chinese government has been repeatedly warned by UN experts that the introduction of evidence derived from coerced or coerced confessions is a violation of international law and that officials involved in the practice must be sanctioned.

A call to action

A year later, we call on the Chinese authorities to respect human rights standards and their international obligations in the cases of Huang Xueqin and Wang Jianbing. Until the Chinese authorities implement the UN recommendations and Huang and Wang are released, the relevant officials should:

  • Ensure that Huang and Wang have free access to legal counsel of their choice and protect lawyers’ rights to defend their clients.
  • Remove all obstacles to free communication between Huang and Wang and their families and friends, whether in writing or by phone.
  • Providing Huang and Wang with comprehensive physical and mental health services, including consensual examinations by an independent medical professional, and sharing the results with attorneys and family members or others upon request.
  • Guarantee that Huang and Wang will not be subjected to solitary confinement or other forms of torture or cruel, inhuman and degrading treatment and that their detention conditions will comply with international human rights standards.
  • End measures aimed at intimidating and silencing members of civil society from taking action to protect rights, and ensure that no evidence from coerced confessions is used in Huang and Wang’s court cases – or anyone else – are permissible.

Signed:

ACAT France

Amnesty International

Center for Reproductive Rights

Center for Global Women’s Leadership, Rutgers University

Changsha Funeng

China against the death penalty

China Labor Bulletin

CSW (Christian Solidarity Worldwide)

International Federation for Human Rights (FIDH), within the Observatory for the Protection of Human Rights Defenders

Front line defenders

Strangers from Hong Kong

Hong Kong Outlanders in Taiwan

human rights in China

human rights now

Index to Censorship

International Human Rights Service

Lawyers’ Rights Watch Canada

Network of Chinese Human Rights Defenders

NuVoices

Reporters Without Borders (RSF)

protect defenders

Taiwan Human Rights Association

Taiwan Labor Front

The law practice

Uyghur human rights project

World Organization Against Torture (OMCT), within the Observatory for the Protection of Human Rights Defenders

[1] Because their cases are closely related, their friends and supporters refer to them as a single case, dubbed the “Xuebing case,” using a portmanteau of their first names.

Photo credit: @freexuebing

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Successful Midland mayors work in partnership with community leaders and members https://namiaz.org/successful-midland-mayors-work-in-partnership-with-community-leaders-and-members/ Sun, 18 Sep 2022 22:24:59 +0000 https://namiaz.org/successful-midland-mayors-work-in-partnership-with-community-leaders-and-members/ What exactly is the role of the mayor? Please also describe your vision for the city and offer three things you would like to achieve by the end of the semester

The Mayor’s primary role is to provide visionary and strategic leadership to the city in collaboration with the City Council and staff. As we look back at generations of mayors in Midland, we see that the most successful mayors in our history have been those who have worked alongside other community leaders and members. Their goal was to advance the city’s business for the benefit of all citizens. It is the Mayor’s job to assess the needs of the community and ensure those needs are met today and tomorrow to ensure we leave a better Midland to our children and their children.

Midland is made up of many organizations, tax authorities, non-profit organizations, corporations and thousands of individuals. Each of these organizations and individuals represents a wide variety of perspectives, goals, and priorities. The Mayor has the specific role – and difficult task – of working with the diversity of voices to set a vision and path for the City of Midland.

During my tenure as a member of Midland City Council, I have worked to collaborate with other leaders on issues related to good tax stewardship, long-term water safety, police and fire support, and improved transparency and customer service at City Hall. As a collaborative council, we have sought to improve parks and quality of life projects in our community, using public-private partnerships to encourage growth in our community. Despite all the challenges of the pandemic and everything we’ve been through post-2020, we’ve moved forward at Midland with positive momentum.

As I have listened to the Midlanders over the past few years, I believe three priorities are at the forefront in the minds of most of our citizens. If I am elected Mayor of Midland, I will also make these my priorities:

  1. Maintain strong fiscal responsibility. Midland is made up of people who want to see taxpayers’ money being used wisely. As a working mom in the oil field, I know we want the city to live within its means, just as we do in our own personal and business lives. We also want our community investments – roads, drainage, infrastructure and city facilities – to be well maintained. Deferred maintenance costs us more money over time, and that’s why we need a city tour that prioritizes the care of these essential services that belong to all of us as taxpayers. Our annual budget must prioritize maintenance and responsible city operations. While some cities across Texas have tried to disappoint their police departments and turn the police into enemies, I will always support the blue and make sure they have the support and resources they need. As mayor, I will try to keep our taxes low and not overburden families and businesses.
  2. Create long-term water security and infrastructure. During my tenure on the City Council, we identified and contracted with Fort Stockton Holdings a long-term water source for Midland. I believe this water source, in addition to several other sources secured by previous mayors and councils, puts us in a prime position in arid West Texas to have water for future generations of Midlanders. But our task is not only done with securing the water supply; This is a task that requires additional strategic planning and forethought. We must secure the right of way and build the infrastructure to bring this water to our homes, schools, businesses and hospitals. We need continuity of leadership at this strategic time to move forward from the step we have already taken to secure the source and now plan the engineering and transportation of water to our community.
  3. Improve transparency and customer service at City Hall. Transparency and customer service are key demands that citizens always make of the government structures we elect and establish. Over the past three years, we’ve heard Midlander request more transparency and responded by implementing more robust communication on social media and using more traditional news outlets. We must keep this a priority for the City of Midland by communicating well with all residents as the City continues to grow and change.

Another related concern we hear from Midlanders has been the level of customer service at City Hall, particularly for those looking to build new projects or add a simple extension to their property. Before the end of the year, we will open a one-stop shop for urban development on the first floor of City Hall. This, combined with the pre-development meeting process already in place, should greatly improve the customer experience for everyone. This is a project that is in progress and something I, as mayor, would like to see completed.

As Midland’s population rejuvenates and the many changes in our world since the pandemic, I offer vigorous leadership with proven results to hold fast to our community’s priorities of faith, family and freedom. I ask for your support and vote for Lori Blong as Mayor of Midland.

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Mississippi Gov. Tate Reeves says it’s a “great day not to be in Jackson amid the water crisis.” https://namiaz.org/mississippi-gov-tate-reeves-says-its-a-great-day-not-to-be-in-jackson-amid-the-water-crisis/ Sun, 18 Sep 2022 04:56:52 +0000 https://namiaz.org/mississippi-gov-tate-reeves-says-its-a-great-day-not-to-be-in-jackson-amid-the-water-crisis/

Mississippi Gov. Tate Reeves (R) said Friday it was, as always, “a great day not to be in Jackson,” the capital, which has been facing a water crisis after Pearl River flooding damaged its water system .

The big picture: Reeves made the comments while speaking in Hattiesburg, Mississippi. It’s the latest in a back-and-forth between Reeves and Jackson Mayor Chokwe Antar Lumumba.

  • They have both accused the other’s office of failing to address long-standing problems with the city’s water treatment before the crisis, Axios’ Shawna Chen reports.
  • “I feel like I should take off my emergency manager hat and leave it in the car and take off my public works director’s hat and leave it in the car,” Reeves added in the speech.

Flashback: Reeves claimed that city officials failed to give the state and federal governments a plan to fix longstanding problems with the water system and that staff at the water facility where the fault occurred were “abandoned.”

  • Lumumba shared records that he says contradict Reeves’ statements, including the city’s capital improvement plan from a few years ago, which included requests for funding for the water treatment plant, and a document detailing a series of critical repairs and a timeline for implementation listed.
  • And last year, Reeves said Jackson needed to work harder to “collect their water bill payments before they start going out and asking everyone else to come up with more money,” the Washington Post reported.

Jackson is citywide The advisory about boiling water, which came into effect weeks before the flooding, was lifted on Thursday.

]]> What was the motive for serial killers Carol M. Bundy and Doug Clark? https://namiaz.org/what-was-the-motive-for-serial-killers-carol-m-bundy-and-doug-clark/ Sun, 18 Sep 2022 01:00:00 +0000 https://namiaz.org/what-was-the-motive-for-serial-killers-carol-m-bundy-and-doug-clark/

Shortly after Doug Clark met Carol Bundy at a local country bar, he moved into the apartment she shared with her two sons from a previous marriage. Los Angeles Magazine writes that Clark Bundy confessed his most depraved sexual desires shortly thereafter. Her first known act was molesting the 11-year-old daughter of a neighbor from her apartment complex. This heinous crime was photographed by the couple. Unfortunately, Clark was not satisfied with this lonely endeavor. He told Bundy that his darkest fantasies included the worst kinds of sexual sadism. He longed to kill a woman while performing a sexual act together, a dark fantasy that would soon be realized.

What happened next is up for debate, as both Clark and Bundy have given conflicting stories. However, it is widely believed that Clark began scouring the Sunset Strip for potential victims, and he didn’t wait long to make his first move. He lured his first victim to his death, a teenage sex worker named Marnette Comer. Next, Clark killed stepsisters and teenage runaways Cynthia Chandler and Gina Marano. The young women had been hanging out on the Sunset Strip when Clark approached them. After murdering her, he confessed his crimes to Bundy. But instead of alerting the police that her boyfriend, who lives in the household, had just confessed to killing three women, she stayed. And then she became part of his plot.

If you or someone you know has been the victim of sexual assault, help is available to help. Visit the Rape, Abuse & Incest National Network website or contact the RAINN National Helpline at 1-800-656-HOPE (4673).

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Where there is loss there is hope https://namiaz.org/where-there-is-loss-there-is-hope/ Sat, 17 Sep 2022 13:52:30 +0000 https://namiaz.org/where-there-is-loss-there-is-hope/

Loss is an inevitable part of life. To be alive means to face both ordinary and extraordinary losses. Sometimes losses are expected. In other cases, the loss comes as an unwelcome surprise.

My own mother was diagnosed with stage 3 breast cancer 17 years before she died. Over the years, she’d had what she called small bouts of cancer that always seemed treatable. But her family always eagerly awaited the big, bad diagnosis that would inevitably result from one of her many doctor’s appointments.

In the midst of a 17-year battle with cancer, Joyce Dresang holds her first grandson. After her initial diagnosis, she hoped for a cure and then she hoped to live long enough to see her children grow up. Her last hope was to see and hold her first grandchild. courtesy photo

We had time to prepare (as best we could) and contemplate the idea of ​​life without her. But when my perfectly healthy father died in a horrific car accident, he was gone in a flash, and nothing could have adequately prepared our family for such a harrowing and surreal loss.

There are unavoidable losses associated with the death of our spouse or partner, sibling, child, parent, or loved one. However, there are other losses that we all struggle with: loss of a job or career, home, marriage, friendship, beloved pet, health, youth, important relationship, meaning or normalcy, financial Security, independence, or the possibility of an imaginary future.

Rumi, a 13th-century Turko-Persian mystic, poet, and Sufi master said of the loss: “Do not cast away the heart, even if it is full of sorrow. God’s treasures are buried in broken hearts.” Much of Rumi’s poetry celebrates the heartache, sorrow, and heartache that accompany loss. However, his wisdom also suggests that hope and optimism always come with loss. . . that is, when we choose to open ourselves to the possibility that something meaningful and even valuable can come out of brokenness and pain. He tells his readers, “Sadness can be the garden of compassion. If you keep your heart open to everything, your pain can become your greatest ally in your life’s quest for love and wisdom… The wound is where the light enters you.”

On the road of a winding 20-year hospice calling, I have witnessed on many occasions how hope can take root and emerge through the cracks of an otherwise hellish landscape of despair and grief. One such opportunity involved a 9-year-old girl named Katie Jones. She was a longtime patient in a pediatric hospice program called Hope’s Friends.

When Katie died after battling severe cerebral palsy for many years, the national limelight was focused on a specific and highly controversial issue surrounding her young life. The girl’s deteriorating health prompted her parents to post a “do not resuscitate” instruction on her wheelchair at school, sparking a very public debate about a very private ordeal.

Katie Jones with her mother Beth just weeks before her death. courtesy photo

That year, Katie’s school district respected her parents’ decision to have DNR orders and complied with the family’s request despite public protests. In the mix of public comments and opinions about her death and her parents’ DNR orders, a local church criticized Hope’s Friends and questioned how a children’s hospice program could include the word hope in its name. Her family’s response was brilliant.

They made it clear that there is always hope in the life of a child with special needs. Katie’s mum explained: “At first we hoped our little girl could have a normal life. Then we hoped for healing. We hoped for better treatments and care that could ease their pain and suffering, and ultimately we hoped for a peaceful death. Now we hope that something worthwhile will come out of this experience and her short life. We also hope for our own survival and growth through this devastating loss. Hope is our friend, always changing but never dying.”

In fact, hope can be a roller coaster ride. With every peak and valley, twist and turn, it can morph into something else. Hope is very future and goal oriented, so it makes sense that hope and post traumatic growth have a relationship because they are both very future oriented. In its purest form, hope is a commitment to move forward.

Understanding that hope and loss are close companions, not adversaries, allows us to be realistic and optimistic at the same time. When my mother was being treated for cancer, part of me believed that the reality of her prognosis needed to be kept in check while there was still hope. In my opinion, these two concepts seemed contradictory.

I now realize that without understanding the adversity we faced, there would have been no reason to invoke hope. I recently spoke to a widow whose husband was cared for by YoloCares. After his death, she said to me, “I knew my husband was going to die, but I hoped it wasn’t true. It was so uncomfortable to think about or even talk about that I chose to avoid the reality of the situation. So in the end, avoidance is the regret I live with, not hope.”

Nothing in this world stands still or escapes the passage of time. All of life continues to change and morph into a different interpretation of itself. Loss and grief are no different. Suffering can be life-giving. Grief can become a source of compassion and grace, and a heart can be broken and open at the same time.

For information about the YoloCares Center for Loss and Hope, contact Chris Erdman at 530-758-5566. A number of self-help groups, coordinated by the center, are open to the community.

— Craig Dresang is the CEO of YoloCares.

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Word over the weekend: This could trigger the next financial crisis, and these are the most – and least – vulnerable housing markets if the US goes into recession https://namiaz.org/word-over-the-weekend-this-could-trigger-the-next-financial-crisis-and-these-are-the-most-and-least-vulnerable-housing-markets-if-the-us-goes-into-recession/ Fri, 16 Sep 2022 21:48:00 +0000 https://namiaz.org/word-over-the-weekend-this-could-trigger-the-next-financial-crisis-and-these-are-the-most-and-least-vulnerable-housing-markets-if-the-us-goes-into-recession/

By Andrew Keshner

The best personal finance stories of Friday

Hello market watchers. Don’t miss these top stories.

At the weekend it was said: This can trigger the next financial crisis

Also, a preview of the Federal Reserve’s next steps to fight inflation and a painful warning from FedEx. Continue reading

These are the most – and least – vulnerable real estate markets when the US enters a recession

According to a report by Attom Data Solutions, housing markets in some major cities are the most vulnerable to declines when a downturn occurs. Continue reading

15 SUVs with panoramic sunroofs for under $40,000

Luckily, we’ve compiled a list of SUVs that cost under $40,000 when they come with a pano sunroof or sunroof, and how much the option costs for each. Continue reading

Prepare yourself for these questions when applying for a credit card

You’ll have to provide a lot of personal information, so be prepared. Continue reading

Yellen: The IRS will be staffing the customer service phone lines for tax season now that they have $80 billion from the Inflation Reduction Act

A frustrating lack of phone service at the IRS for both taxpayers and tax preparers was a glaring problem, experts said. Continue reading

Is the housing market really collapsing? Redfin’s chief economist shares her predictions

Inflation is high and interest rates continue to rise, leading to much speculation about the real estate market, with many tossing the word ‘crash’ around. Continue reading

Kim Kardashian is reportedly listing her Calabasas condo (again) and her Hidden Hills home

If you’ve always wanted to keep up with the Kardashians, now’s your chance to actually live like one. Kim Kardashian is reportedly sorting out her real estate portfolio. Continue reading

Workers and employers are poised to benefit from Medicare drug price reforms, research shows

States can rely on the Inflation Reduction Act to extend drug savings in the commercial market. Read more

-Andrew Keshner

 

(ENDS) Dow Jones Newswires

9/16/22 1748ET

Copyright (c) 2022 Dow Jones & Company, Inc.

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Tragic details about Doris Day https://namiaz.org/tragic-details-about-doris-day/ Fri, 16 Sep 2022 03:47:00 +0000 https://namiaz.org/tragic-details-about-doris-day/

Doris Day came from a broken home when her father left her family when she was 12 TCM. In her autobiography “Doris Day: Her Own Story”, She wrote that her early memories of her father were of a “staid German fanatic”. Still, even after her father left she could never blame him.

After years of separation, the actor met her father in 1956. Loud her book, she saw him at the train station in Cincinnati, Ohio, where he invited her to visit his bar, which Day was shocked to discover was in a mostly black neighborhood. Walking into the bar, she met Luvenia, a black woman and her father’s fiancée. “I felt completely enveloped by… the wonderful change that had come over my father.” wrote Day.

She didn’t see her father again until several years later, when her mother and Marty Melcher went to her aunt’s home — in an incredibly racist neighborhood. Day invited her father, but when he showed up, he left Luvenia in the car. No one – including Day – asked them to come in, and after a brief and awkward time, Day’s father left while his daughter just waved at Luvenia in the car. The singer never saw him again.

If you or a loved one has experienced a hate crime, call 1-855-4-VICTIM or the VictimConnect Hotline via chat for more information or assistance in finding support services. If you or a loved one is in immediate danger, call 911.

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Positive newborn genetic screening in Pompe worries mothers Interview study shows insecurity for the future of parents of LOPD children https://namiaz.org/positive-newborn-genetic-screening-in-pompe-worries-mothers-interview-study-shows-insecurity-for-the-future-of-parents-of-lopd-children/ Thu, 15 Sep 2022 14:29:53 +0000 https://namiaz.org/positive-newborn-genetic-screening-in-pompe-worries-mothers-interview-study-shows-insecurity-for-the-future-of-parents-of-lopd-children/

In an interview study, mothers of children who test positive for Pompe disease in newborn genetic screening programs—and who have been diagnosed with late-stage type, or LOPD—expressed uncertainty about the age of onset of symptoms in their sons and daughters and concerns about the future of their child.

Researchers say that better understanding these mothers’ experiences can help improve care for both patients and their parents.

“Increased provider education and attention to recognizing and addressing the fear, anxiety, and uncertainty generated by the presymptomatic diagnosis of a child with LOPD could benefit families affected by the diagnosis and patient relationships and improve providers,” the team wrote.

The study’s findings may educate healthcare providers about the psychological implications of a positive newborn genetic screening result and a late-onset Pompe disease diagnosis, the researchers said.

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The team suggested beginning proactive care immediately, noting that all parents surveyed “reported that they Googled Pompe disease, which led to devastation, anxiety and insecurity.”

“I know [the nurse] didn’t tell me about Google and I’m so grateful she told me so, but I had idle hands and an anxious heart and I had to do it,” one participant told Interviews.

The study, “A qualitative study: experiences of mothers with their child’s late-onset Pompe disease diagnosis after newborn screening“, was published in International Journal of Newborn Screening.

Received an LOPD diagnosis

There are three types of pompe: two early-onset forms characterized by low muscle tone, breathing problems, and an enlarged heart, and a late-onset form that can develop anytime after 1 year of age. Late-onset Pompe disease, known as LOPD, is characterized by muscle weakness and difficulty breathing, but has a wide range of disease severity and age of onset.

Because inherited genetic defects cause Pompe disease, newborn screening programs have been established to avoid delays in diagnosis and ensure prompt treatment. This is especially important for babies with the more severe infantile form.

However, most newborns who carry Pomp-related mutations identified through genetic screening programs develop LOPD.

Such early diagnosis of LOPD can improve health outcomes by avoiding diagnostic delays and reducing uncertainty and anxiety for patients and families. Conversely, the disadvantages of an early LOPD diagnosis include the parents’ fear of the course of the disease (prognosis), the possible medicalization of an asymptomatic child, increased health care costs and insurance uncertainties.

The aim of this study, conducted by researchers at Cincinnati Children’s Hospital Medical Center in Ohio, was to describe the experiences of parents and examine the implications when a newborn is diagnosed with LOPD based on early genetic screening.

The team asked eight mothers, ages 29 to 38, about their experiences with their child’s positive genetic screening test, living with the diagnosis, and medical surveillance.

All mothers found out about the positive screening test within a few days to two weeks after the birth of their child. The waiting time of a few days to a few months for the first appointment, additional information and the specific diagnosis were described as sources of stress and anxiety.

“The waiting game is so hard just figuring out if it’s a late start or if it is [infantile]-beginning,” said participant 1 in her interview. “I think this waiting game almost got me. It was very, very difficult.”

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Nexviazyme |  Pompe Disease News |  Main graphic for the column

After a positive newborn gene screening

Participants described trauma from the news, stress that their child has a genetic disease, and fear for the future. Some expressed sadness at being diagnosed with LOPD, but all were relieved that their child was diagnosed with LOPD rather than infantile pompe.

“It was an extremely stressful time when I first found out, especially since you’re extremely hormonal postpartum, and then basically telling me there’s something wrong with my child was a lot,” she told the attendee 5.

Living with the diagnosis created uncertainty regarding symptom onset, the variability of LOPD, future finances, insurance coverage, and opportunities for the child’s future, particularly career potential. These parents also expressed feelings of anticipated sadness and concern, but at the same time expressed gratitude that their child was diagnosed early.

The mothers said they were overly conscious of their child’s health and overanalyzed their behavior, paying particular attention to developmental milestones and fearing any finding could be a Pompe symptom.

“You start to overanalyze everything and that’s what I did to her,” said participant 4. “Every time she chokes, is that the respiratory part of the pompe or is it just that she’s a normal newborn? Her legs kind of twitch every now and then, is that pompe or is she just a normal newborn…”

To cope, many participants focused on their families and their daily lives—specifically, not thinking about their child’s diagnosis until the next clinical visit. The most common support system was a Facebook Pompe parent group alongside family, friends, religion/belief and other communities. Further education, treatment of psychosocial issues and reassurance were also offered by the child’s health care team.

Many families found that as they gained acceptance and gathered more information, they would label their child “normal” and not apply labels based on the diagnosis. Participant 5 said of her son: “He doesn’t have any of the symptoms and we don’t need to do any of the treatments, so to us he’s a normal kid doing normal things.”

One family opted for prenatal testing in a future pregnancy, another decided against having more children because of that first traumatic experience, and one decided the risk of recurrence was low and said they would have more children.

Medical surveillance helped comfort parents and reassure mothers, they said, noting that such surveillance would detect early symptoms and allow them to initiate treatment without delay.

“It kind of alleviates some worries on our part about what happens when we miss something and we don’t know,” said participant 6 of routine clinical visits. “It’s kind of comforting to have these consistent appointments.”

In contrast, participants felt frustrated when disagreements with providers about possible symptoms arose and reported feeling worried, anxious, and insecure between visits. The team reported no obstacles to surveillance in these cases.

Mothers described being proactive in requesting more monitoring from their providers, with one mother (participant 3) switching providers for her three LOPD children. Participants also suggested that providers should listen to their suggestions for changing medical surveillance.

“We really are [our children’s] supporters, so it was not a matter of course that we stand up for children, but a necessary enrichment for us,” said participant 3.

Literature Recommendations

newborn screening

improve care

Parents said they wanted more education from providers who provide newborn genetic screening results and provide ongoing care.

Participant 6 said, “When something is brought to newborn screening in this condition, you have some kind of training [for providers] in it so that they can help the families.”

The mothers also said that a person with greater experience of Pompe disease should provide the screening results. During the first few visits, providers should be mindful of the parents’ stress and warn them about the types of information they may see on the Internet.

“I so hope she wouldn’t have told me anything to google because the first thing that came up when we googled was that people with this diagnosis don’t live past a year or two,” said participant 1 “It’s just hard to even get through this. It’s not even our reality and it’s still hard for me to talk about.”

Mothers suggested that other families who have received a positive screening test and LOPD diagnosis should proactively monitor and advocate for their child and join support groups such as a Facebook Pompe parent group.

Overall, the study results “should be evaluated by providers so that they can guide parents based on their coping style and provide the resources needed,” the researchers concluded.

“Future research into what families experience, how these children grow up, and how to predict disease outcomes will benefit from how providers make recommendations for follow-up care in pre-symptomatic individuals and personalize their care,” they added.

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