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Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

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Those who wish to acquire practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD), and this year 26-26 June 27th takes place.

The conference brings together patients, families, healthcare professionals and other supporters to learn, share and connect.

Due to the ongoing COVID-19 pandemic, general sessions, breakout workshops and networking will again be virtual. The sessions, which provide perspectives from patients, caregivers and the medical community, are broadcast live and recorded for later viewing. Throughout the forum, participants can visit the exhibition hall and meet with other participants.

Also this year the Rare Impact Awards return as part of the program. This June 28 presentation honors individuals, organizations and industry innovators for their exceptional work benefiting the rare disease community.

“The health and well-being of people with rare diseases, their relatives and those who work to improve their lives continue to have top priority for all of us here at NORD,” said the forum message.

“The COVID-19 pandemic has given us new ways to connect with our community, and our 2020 virtual program has been the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while we participate in this effective program, ”said NORD.

Registration for the “patient-centered” event costs US $ 39 for patients, nurses, students and representatives of the NORD patient organization. The cost is $ 75 for professional lawyers, scientists, doctors, and government officials and $ 500 for members of the NORD corporate council. For pharmaceutical, insurance, or other agents, registration is $ 650.

On the agenda is the opening discussion on the subject of “Patient-Professional Partnership” and includes three stories about the close bond between patients and their caregivers.

Breakout sessions for Saturday, June 26th, include “Coping with Graef and Anticipatory Grief”, “Shared Decision-Making with Your Care Team” and “Working While Rare”, followed by “Involving in Clinical Research: Finding” and Preparing for Clinical Trials, ”“ Navigating Insurance, Social Security Disability, and Patient Aid Programs, ”and“ The ABCs of Advocating Your Child’s Education ”in the second group of workshops.

This is followed by a plenary discussion on the subject of “Building resilience in a time of the unknown”. Speakers will examine how patients have coped while waiting for a diagnosis, how they fare while waiting for new treatments, and how they kept it together during the pandemic.

June 27th begins with an opening discussion in the plenum entitled “The Rare Sibling Experience”. Here, three siblings of rare disease patients will share their experiences, including how they became advocates.

Breakout sessions that day include “Fight Back and Fight Forward by Advocacy”, “Palliative Care: Unmasking the Myths”, “Rarely in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the early discussion groups. Later offerings this Sunday will include “Aging with a Rare Disease”, “Finding Your Community and Building Your Support Network” and “The Intersection of Race, Ethnicity and Equality with Access to Diagnosis and Treatment”.

The concluding plenary discussion, entitled “Rare Breakthroughs Now and on the Horizon”, will look at the latest advances in the diagnosis, treatment and care of rare diseases.

At the beginning of the year, NORD called on people to report on their practical experiences with rare diseases at the conference. A total of around 55 speakers will attend the conference, including doctors, nurses and other health professionals. Access to the virtual program will be provided by email during the week of the event.

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How To Distinguish Between Various Diseases & Personality Disorders

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While society seems to be moving towards a more open discussion about anxiety and depression, there still seems to be a lack of understanding of other mental health diagnoses such as personality disorders. Personality disorders remain highly stigmatized and therefore ashamed to recognize the symptoms and seek appropriate treatment. Learning more about what personality disorders are (and aren’t) can help break down those barriers.

In this article, we take a look at the reality of what personality disorders are, how to distinguish between different diseases and personality disorders, and what treatment for personality disorders is like.

What are personality disorders?

Personality disorders are mental illnesses that affect the way a person thinks, feels, and interacts with others. A person with a personality disorder is likely to experience significant stress and difficulty in their day-to-day functioning due to the way they think, react to, and relate to other people. It is estimated that around 9% of the population have a personality disorder, although many people don’t even realize they could have one.

There are several types of personality disorders that are categorized into clusters A, B, and C. These categories identify unconventional or suspicious behavior, difficulties with emotional regulation and impulsiveness, and anxious or fear-based behavior in relationships. Examples of personality disorders are borderline personality disorder, antisocial personality disorder, narcissistic personality disorder, and dependent personality disorder. Each condition has its own unique signs and symptoms, although they all involve longstanding unhealthy patterns that cause problems in human relationships.

Misdiagnosis of personality disorders

It is common to confuse certain personality disorders with other types of chronic brain disorders and mental illnesses. For example, borderline personality disorder is often misdiagnosed as bipolar II disorder because it shares symptoms such as impulsive behavior and difficulty regulating emotions. There is also evidence that men with personality disorders are drastically underdiagnosed, which may be due to gender roles and toxic notions of masculinity in our culture.

Many people with borderline personality disorder (BPD) are also diagnosed with other mental illnesses such as anxiety, depression, eating disorders, substance use disorders, and so on. Therefore, more focus can be placed on these other challenges and treatment for BPD can fall through the cracks. It is critical that a person receives the correct diagnosis in order to receive appropriate treatment when they have a personality disorder.

Treatment of personality disorders

Contrary to popular myth, personality disorders are actually treatable. Certain forms of psychotherapy such as psychoanalytic therapy and dialectical behavior therapy (DBT) have been shown to be effective in treating personality disorders. Although there are no drugs that are specifically used to treat personality disorders, certain drugs can be helpful in treating symptoms of anxiety, depression, or mood swings. It is also beneficial for people with personality disorders to develop healthy lifestyle habits and strategies for coping with stress.

Seeking support with a personality disorder

If you notice a long-standing pattern of unhealthy dynamics in your relationships, or difficulty controlling your emotions or behaviors, consider reaching out to a psychologist. There is support available to help you understand what you are experiencing, manage your symptoms, and develop healthier relationship patterns.

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How psychedelic-assisted therapy with MDMA and psilocybin works

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Investors open their minds and their wallets to the possibilities of psychedelic therapies.

Three biopharmaceutical companies that aim to manufacture psychedelic drugs for the treatment of mental disorders have gone public in the past few months: Peter Thiel supported Atai Life Sciences’ IPO in June and now has a market capitalization of $ 2.6 billion; MindMed went public in April and now has a market capitalization of more than $ 1 billion; and Compass Pathways went public in November, with a current market cap of nearly $ 1.5 billion.

Together, the three companies have more than nine psychedelic therapy drugs in their pipeline. Not to mention the work of many other private biotech and telemedicine companies like Gilgamesh Pharmaceuticals, which is supported by Y Combinator, as well as startups like Mindbloom, which already treats patients with ketamine-assisted psychotherapy. (Ketamine is not a psychedelic, but is considered a dissociative anesthetic that can distort vision, colors, sounds, self and surroundings).

All of this means that triggering mind altering drugs like MDMA could become a regular part of therapy for treating conditions like depression, post-traumatic stress disorder, addiction, chronic pain, and obsessive-compulsive disorder over the next two to five years.

This is what it could look like and what the research says.

How psychedelics work for therapy

Psychedelics are substances that change perception and mood and influence a number of cognitive processes. The classic psychedelics include MDMA, also known as “Ecstasy” or “Molly”, LSD, psilocybin or “mushrooms”, Ayahuasca and Ibogaine.

Working with therapists, research has shown that psychedelics can help treat conditions historically difficult to treat by essentially “transforming” the way “parts of the brain talk to each other,” said Jennifer Mitchell, neuroscientist and professor in the Departments of Neurology, Psychiatry, and Behavioral Sciences at the University of California San Francisco.

Researchers provide therapeutic support in the treatment room of one of the study centers for MAPS-sponsored clinical trials of MDMA-assisted therapy for PTSD.

Courtesy of MAPS.

“Psychedelics allow processing in a way that allows subjects to let go of things that previously plagued them,” she says.

As Mitchell explains, your brain goes through critical periods of learning and development at a young age, which then close as you age. Researchers believe that psychedelics “only open these closed critical periods for a tiny window of time,” she says.

“When this critical period is open again, you want to make the most of it and make this potential change as positive as possible,” she says.

For example, with psilocybin the drug is believed to increase connectivity in the brain and increase “neuroplastic states,” which are the brain’s ability to reorganize and adapt, says Dr. Stephen Ross, Associate Professor of Psychiatry at NYU Grossman School of Medicine, who has conducted clinical trials in psilocybin-assisted therapy for 16 years.

For example, a recent study from Yale University on mice found that a single dose of psilocybin caused an immediate increase in connections between neurons that lasted a month afterward.

When taking psychedelics, “parts of the brain that don’t normally talk to each other begin to communicate with each other, and it seems to reset brain patterns in some way,” he says.

What psychedelic therapy looks like: “It’s not a Burning Man”

MDMA-assisted therapy could be approved for medical use by the FDA as early as 2023, while other psychedelics, particularly psilocybin, are waiting in the wings for their turn for medical use.

If and when psychedelic assisted therapy is approved by the FDA, it will be far more complex and medical than just someone taking mushrooms for recreation in the woods.

“You don’t just get thrown in,” says Mitchell. “It’s not Burning Man or anything. It’s very thoughtful.”

First, patients need to be carefully screened to be eligible.

“It’s not for everyone,” says Dr. Corine de Boer, Chief Medical Officer at the Multidisciplinary Association for Psychedelics Studies, a nonprofit research and educational organization. For example, treatment is not suitable for people with a history of psychosis or cardiovascular problems. (And right now, psychedelics aren’t being studied in people with milder mental illnesses or people without clinically diagnosable conditions.)

For those who qualify, psychedelic assisted therapy sessions will “be a synergy between the participants, the therapist and the medication,” says de Boer.

Research-grade capsules for use in MAPS-sponsored clinical trials of MDMA-assisted therapy for PTSD.

Courtesy of MAPS.

Before any medication is administered, doctors meet the patient to discuss what might happen to them – for example a traumatic event or painful memories from childhood, or, in the case of a terminally ill patient, they can check how the disease has affected them Has affected life.

The sessions in which the patient takes psychedelic medication can be quite labor-intensive and long (around eight hours), says Mitchell. A single dose of MDMA will work for six hours and half a dose will be given approximately 90 minutes after the session begins.

To provide patients with a comfortable travel environment, providers set up a room that resembles a living room or bedroom and give patients an eye mask and a playlist of soothing music before taking the medication. Patients are invited to “go inside” and reflect on the issues they discussed in the preparatory sessions.

“Whatever comes up for them is what medicine is based on their own history and [brain] Circuit, “says Mitchell.

Patients can talk about the issues that arise, and the therapists are there to help them accept and listen to any ideas that come to the surface rather than asking questions. “As you can imagine, there are a lot of emotions,” says Mitchell.

Patients are conscious and can comfortably eat, drink, and use the toilet, but are accompanied by two staff members when they stand or walk, Mitchell explains.

The next day there is an “integration session” in which the therapists talk to the patient and help him understand what he has experienced. The patient could return to the reasons why they did the treatments in the first place and, for example, discuss what they felt or saw during the experience.

Mitchell says an important transformation occurs when people take psychedelics in this clinical setting. “It’s amazing how much lighter and freer people seem to be after the first session,” she says.

In fact, in a recent MDMA study, depression was relieved or significantly reduced after three doses given about a month apart.

It is to be expected that these treatments will be covered by the health insurance at some point. Obtaining insurance to cover treatment also depends on the compounds being moved from their current classification as List I Medicines under the Controlled Substances Act. (Experts believe MDMA could be postponed in the next two years.)

Of course, the treatment carries risks. Psychedelic therapy is not recommended for people with psychotic disorders and people with high blood pressure. Outside of a clinical trial, many psychedelics, such as psilocybin and MDMA, are classified as Schedule I drugs under the Controlled Substances Act.

But “in the next three to five years psychiatry will change profoundly” with psychedelic-assisted therapy, says Ross.

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‘My daughter, 13, went missing from hospital – she’s in crisis waiting months for a mental health bed’

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Earlier this week, Emma Shepherd received the phone call she was afraid of. A nurse called at 8 p.m. last Tuesday and told her not to worry, but her 13-year-old daughter, Lila Veasey, had escaped from the hospital.

“She is so vulnerable,” she said. “I was so concerned and thought that in her weak condition it could be very dangerous to run in this heat and risk becoming dehydrated.”

After four hours of desperate search as darkness fell, the barefoot Lila was found “terrified, shaken and very upset” three miles from Sheffield Children’s Hospital.

It is the first time the young woman has been able to escape, but she has made several attempts in the past three months – that is how long she was in sections, waiting for a special bed. Three months without tailor-made treatment for her eating disorder, anorexia.

When Lila was first admitted in April, she was ready to eat. But when the doctors tried to increase her food, she refused meals and started screaming and locking herself in toilets.

You can’t just tell them to eat. Lila needs the specialized psychological support

She then had to be force-fed food and even water through a hose. She was taken from the ward along with other youths and taken to her own room with a private bathroom. Visits outside in kindergarten were forbidden.

“She is isolated and locked in her room 24/7 and is going mad,” said Emma. “Any parent of a child with an eating disorder will tell you that you can’t just tell them to eat. Lila needs the specialized psychological support alongside her food, but it’s just not there and that’s why she went downhill. “

Lila was found on her bare feet three miles from Sheffield Children’s Hospital (Photo: Emma Shepherd)

Children in crisis

Emma, ​​33, from Sheffield would like to point out that it is not the hospital staff’s fault. “They are doing their best, but the nurses are not trained in mental health.

“CAMHS [Child and Adolescent Mental Health Services] needs more money from the government at the national level. We need more special forces.

“Since sharing my experience online, I’ve received hundreds of messages from parents in a similar boat, so many that I can’t find the time to reply. It’s heartbreaking. “

Indeed, recent figures show a worsening crisis in child mental health services. Even before the outbreak of the pandemic, up to half of all young people called for help were left without adequate support.

The latest figures from NHS Digital show that in 2019-20, 23 percent of the 547,590 under 18s who relied on the NHS mental health, learning disability and autism services had no contact with health workers. For another 26 percent – 144,384 people – the referral was closed without treatment.

The 13-year-old struggled with being locked in a hospital room for months (Photo: Emma Shepherd)

And during the pandemic, the demand for mental health services for young people has risen sharply. Earlier this month, it found that referrals increased by a third in 2020-21 compared to 2019-20.

Parents flood social media groups with stories of how their children – even those with severe psychiatric problems, including or talking about self-harm or attempted suicide – are not getting the proper support.

The number of young people with eating disorders hospitalized in England has increased during the lockdown – the number of under-20s admitted last year topped 3,200, nearly 50 percent more than in 2019-20 .

“She must be in a safe unit”

What really frustrates mom of three Emma is that she began seeking action for her daughter from an early age in her illness.

Lila had started showing signs of eating disorders in January and when it became more noticeable in March, she sought help from her family doctor. “She started to refuse family meals and only ate salad and fruit,” said Emma, ​​a beautician. “She was called fat and was obsessed with weight loss videos on TikTok.

“When it got worse and I took her to the doctors, she collapsed and told him she had only eaten 400 calories a day. She confessed that she starved at school all day.

“He was concerned that she was underweight and wanted her to come back in a few weeks for a review. But at that time she was not offered any advice. “

Weeks later, Lila stopped eating altogether for five days, and then her parents took her to the hospital.

Emma calls for more urgent funding for mental health services (Photo: Emma Shepherd)

“She tries to escape from the hospital every day, she has to be in a safe ward,” said Emma. “She only gets counseling once a week while she gets it maybe four times a week and other activities to help her eating disorder if she had a CAMHS internship.”

Sheffield Children’s Hospital said that inpatient beds for patients with conditions like Lila are scarce across the country and that the national CAMHS, through NHS England, is responsible for allocating those beds.

She has deteriorated drastically and she might not have done it if she had got help

“Lila asks me every day: ‘When will I get a bed?’ And I never have good news to tell her. I was told she could get one in September, but that’s not early enough and it’s not even a guarantee.

“She has gotten drastically worse and she might not have made it if she had got help. We tried to enable them to intervene early. I feel hopeless, it affects the whole family. “

Family friend Rebecca Grafton set up a GoFundMe page to help Lila’s parents raise money for private therapy.

£ 79m pledged to support the mental health of adolescents

The government announced in March £ 79 million in support of child and adolescent mental health.

The funding will increase the number of mental health support teams in schools and colleges from 59 to 400 by April 2023 and support nearly three million children.

Access to community mental health services will also be expanded, so that 22,500 more adolescents will have access to help and support – including conversational therapy and cognitive behavioral therapy – between 2021 and 2022. And 2,000 more will benefit from help for eating disorders.

However, health chiefs warn the immediate effects of lockdowns need to be addressed, with the NHS England pledging an additional £ 40million in services earlier this month.

A Health and Welfare Department spokesman said: “We understand the importance of early intervention and treatment and are allocating an additional £ 2.3 billion a year to mental health services through 2024 – the largest mental health funding in the history of the NHS .

“At the same time, our £ 500 million intergovernmental mental health restoration action plan is specifically targeting people and groups hardest hit by the pandemic. This includes £ 79 million to accelerate and expand the delivery of mental health services to children and adolescents.

“To make it easier for people to access the right support, the NHS is introducing a four-week waiting period for mental health treatment of children and adolescents in 12 areas of England, to give government recommendations on access and waiting time standards.”

I’m really sorry for the hospital

Sheffield Children’s Hospital said it was working closely with NHS England to find a suitable place for Lila’s care.

Sally Shearer, Director of Nursing and Quality, said, “We are really sorry that what happened on Tuesday caused Lila’s family to be in distress. We have reviewed the incidents and are identifying measures to prevent another situation of this kind in the future. We continue to do our utmost to ensure the safety and well-being of all children and young people in our care.

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Exercise addiction affects more people and can lead to eating disorders – but counseling can help

“We want to assure families that we take safe staffing very seriously. The high rates of Covid infection the country is currently experiencing mean that we currently have more colleagues who need to self-isolate, but shifts are covered by other colleagues and qualified temporary workers and we have been able to keep the workforce consistent.

“We understand that it is incredibly worrying for families waiting to find a suitable place for their child. Work is ongoing across the country to provide more places for children and adolescents in need of expanded support, but in the meantime our clinical teams are working hard to provide the best possible care in the children’s hospital. “

Do you have a real life story? Email to claudia.tanner@inews.co.uk.

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