Kuwait affirms keenness to care for people with Down syndrome

from Kuwait News Agency (KUNA):
A Kuwaiti official in the field of health and care for people with Down syndrome said on Thursday that Kuwait, with all its health, educational, and psychological institutions, is always keen to care for its citizens with Down syndrome, providing them with the best support which guarantees a better future for them.
Dr. Sadika Al-Awadi, Chairperson of Kuwait Down Syndrome Society, told KUNA that Kuwait was able to provide people with Down syndrome, of all ages, with medical, educational, rehabilitating, and entertaining services through the Society, indicating at the same time that some individuals with Down syndrome, who went through the Society's psychological and educational rehabilitation, showed remarkable perceptional and behavioral improvement as they also became dependent on themselves.

50 Countries Unite To Fight Medical Discrimination Against People With Down Syndrome

by Eleanor Goldberg from the Huffington Post:
3/21 marks World Down Syndrome Day, giving advocates the opportunity to celebrate the lives of people with the condition, and also to push for equal treatment in every area of life.
This year, the awareness campaign is focusing its efforts on urging countries worldwide to provide adequate health care to people with Down syndrome.
People with Down syndrome typically have an increased risk for some medical conditions, including congenital heart defects, respiratory and hearing problems and Alzheimer's disease, according to the National Down Syndrome Society. While many of these conditions are treatable, and people with Down syndrome can live long and healthy lives, they still face elements of discrimination that interfere with their treatment.
According to Down Syndrome International, people with Down syndrome are often denied or delayed access to health care. They sometimes receive incorrect diagnoses due to their physician’s lack of knowledge or inadequate training, and are often excluded from the treatment plan process and making medical decisions.

Tokyo court stops deportation of Filipino man with child struggling with Down Syndrome

from Japan Daily Press by Maan Pamintuan:
The Tokyo District Court dismissed a deportation case filed against a Philippine national illegally residing in Japan. The 47-year old Filipino, who has a child with Down syndrome, was allowed to stay in the country to help the child receive the medical treatment needed.
Entering Japan illegally in 1997, the man was found by immigration authorities in 2009. The Tokyo Regional Immigration Bureau filed a deportation case in May 2012, which the man has sought to be nullified by the Tokyo District Court. His wife, who came into the country eight years after him has already acquired a permanent resident status. They have two children, with the youngest has Down syndrome and is going to a special school for the disabled. The child also needs thyroid medication treatment every three months.
Presiding judge Yutaka Taniguchi allowed the man to stay mainly due to the special needs of his child. He knew of the limited opportunities for “necessary treatment in the Philippines”, with minimal schools and teachers that offer specialized education, the kind that the man’s child needs. “There is a need to care properly for the child. But if the father is deported, the family he leaves behind will be in an extremely difficult position (financially),” he said. Though immigration officials noted that the child is already of age to adapt to life in the Philippines, the judge denied their argument and ruled in favor of the Filipino man.

UC San Diego Launches Unprecedented Down Syndrome Study

from UC San Diego:
To many, Down syndrome (DS) is a childhood condition. But improved health care means that individuals with DS now routinely reach age 50 or 60 years of age, sometimes beyond.  However, if they live long enough, people with Down syndrome are almost certain to develop Alzheimer’s disease (AD).
Risk estimates vary, but the National Down Syndrome Society says that nearly 25 percent of individuals with DS over the age of 35 show signs of Alzheimer’s-type dementia, a percentage that dramatically increases with age. Almost all develop dementia by the age of 60.
“The more we learn about Down syndrome and Alzheimer’s disease, the more we realize these conditions – one seen at birth, the other quite late in life – are two sides of the same coin,” said William C. Mobley, MD, PhD, professor and chair of the Department of Neurosciences at UC San Diego School of Medicine. “Autopsies of DS and AD brains reveal virtually identical pathologies – the same telltale amyloid plaques and neurofibrillary tangles.”
Under the auspices of the Alzheimer’s Disease Cooperative Study (ADCS), based at the University of California, San Diego School of Medicine, a new clinical study called the Down Syndrome Biomarker Initiative (DSBI) was launched in March 2013. According to the study’s director, Michael Rafii, MD, PhD – medical director of the ADCS – its aim is to discover indicators of Alzheimer’s and study progression of the disease, with the ultimate goal of better understanding brain aging and AD in adults with Down syndrome.
The three-year pilot study has enrolled 12 participants, aged 30 to 60 years of age. Study participants will be screened for various biomarkers of AD, using tests that include three types of brain scans, retinal amyloid imaging and blood tests, among others.
“Findings to date using MRI and amyloid PET scans indicate that individuals with Down syndrome show the same brain patterns as those in the general population with the earliest stages of the memory-robbing disease, called prodromal AD,” said Rafii.  He added that indications of increased brain amyloid deposition – the insoluble protein aggregates found in the brains of patients with AD that are thought to be an underlying cause of the disease – is similar in individuals with DS and those in the general population with AD.
People with amyloid deposition in the brain experience progressive cognitive deterioration. Brain atrophy – shrinking of the brain’s hippocampus – caused by the amyloid buildup, affects routine functional abilities, ultimately leading to complete physical disability.
“By understanding the progression of the disease in people with Down syndrome and those in the general population, we hope discoveries can be made in each group that can be shared between both populations,” said Rafii. 
The design of the DSBI pilot study is patterned after the Alzheimer’s Disease Neuroimaging Initiative (ADNI), which began in 2004 to establish neuroimaging and biomarker measures of AD.  ADNI tracked the changes taking place in the brains of 800 older people, either free of symptoms or diagnosed with late-stage mild cognitive disorder and early Alzheimer’s disease. 
“Our aim is for the Down Syndrome Biomarker Initiative to mirror ADNI’s successes,” Rafii said.  “ADNI has helped the international Alzheimer’s research community learn significant lessons about the pathology and biomarkers of AD, which in turn has driven new ways of looking at the disease and new studies that we hope will lead to viable treatments. We are confident we can do the same thing for Down syndrome.” 
The 12-subject pilot study at UC San Diego is funded by Janssen Research & Development, LLC.  The research is projected to expand into a five-year, 1,000-subject international study.

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Media Contact: Debra Kain, 619-543-6163, ddkain@ucsd.edu; Jeffree Itrich, ADCS, 858-246-1317, jitrich@ucsd.edu

Adults with disabilities get inadequate health care, Canadian study finds

By Andrea Gordon from the Star:
Adults with autism, Down syndrome and other developmental disabilities face more physical and mental health problems but are less likely to get the care they need than other adults, a new Ontario study has found.

The research, released Tuesday, is the largest examination of its kind and paints a worrisome picture of how this “silent minority” — often unable to communicate their distress — is served by the health care system.

“It’s hard for them to make their needs known,” said Yona Lonsky, lead author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.

And, what’s more, the care these adults receive often does not meet health-care guidelines for this cohort, she added.

While a higher proportion of these adults live in poorer neighbourhoods and are diagnosed with chronic diseases, they face larger gaps in services.

They more often end up in emergency departments in crisis. But they are less likely to visit their family physicians for regular checkups or standard preventive care such as cancer screening.

Almost half are prescribed multiple drugs, most commonly for mental health and behavioural problems, the study found. Twenty-two per cent take five medications simultaneously, and some in potentially dangerous combinations.

And while a team approach is recommended to co-ordinate care between physicians, nurses, occupational therapists, psychologists, social workers and other care providers, only one in five adults with a developmental disability is being treated by this type of health team.

The study was conducted by the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH). A summary was released Tuesday and the full report will be available in December.

The findings didn’t come as a surprise to Roger Oxenham of Toronto, whose daughter Rachel, 26, has a developmental disability and bipolar disorder.

Rachel went through a crisis as she entered her 20s, a period when many young adults like her are most at risk of falling through the cracks as they “age out” of pediatric care and children’s services.

In one year, she ended up in emergency rooms around the city 18 times, arriving in distress and fearing she would harm herself. It wasn’t uncommon for Rachel to wait 12 to 14 hours, alone and upset, before being admitted to the psychiatric ward, where she would be medicated and released, only to start the cycle again.

While her own physician and emergency staff provided good care, says Oxenham, there was no communication between caregivers. The strategy seemed to be “patch her up and send her out until the next time.”

He says the system needs to connect hospitals, parents, family doctors and other therapists who work with patients and understand their complex needs.

That approach is critical, adds Lonsky, a scientist clinician with CAMH and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) program. She says initiatives are also needed to empower patients, parents and caregivers advocate for themselves.

The Atlas study is the first to track health needs and treatment for this often overlooked group — estimated at 66,000 adults under 65 in Ontario. Too often they become invisible after moving from the care of pediatricians and parents into adulthood, particularly the majority who live with mild disabilities. As a result their health problems and needs are overlooked.

Researchers had to mine data from social services to get an accurate picture of the numbers of adults with developmental disabilities and their health care needs.

Concern over high incidence of Down syndrome in UAE

By Samir Salama, Associate Editor from Gulf News.com:
FNC members ask for incidence of Down syndrome to be cut down.

Abu Dhabi: Action must be taken to cut the high incidence of Down syndrome among Emiratis, which is double the global average and higher than the incidence in other GCC members, the Federal National Council told the government yesterday (Tuesday).

Dr. Amal Abdullah Al Qubaisi, a member from Abu Dhabi, asked Abdul Rahman Al Owais, Minister of Health, why the incidence of Down syndrome, a chromosomal condition which affects physical and mental development, among Emiratis is twice the world average and what action the ministry has taken to address the issue.

“How can the Ministry of Health explain this extremely high incidence of Down syndrome among Emiratis [one in every 319 births], compared to Oman [one in every 500 births], Qatar [one in every 546 births], Saudi Arabia [one in every 554 births] and Kuwait [one in every 581 births],” Dr Amal asked.

The condition is associated with delayed growth, joint laxity and incomplete organ formation, mostly of the heart.

The incidence of Down syndrome among Emiratis in Dubai is one in every 320 births, higher than the world average of one in every 800 births, according to data released in March by the Centre for Arab Genomic Studies.

Dr. Amal questioned the ministry’s coordination with other competent authorities, including the Ministry of Social Affairs, demanding utmost care be given to Down syndrome patients and their families. Dr. Amal also urged the Ministry of Health to set up specialised clinics in every emirate, providing free of charge medical services and reduce the charge for rehabilitation sessions to not more than Dh150 a session.

Dr. Amal said as many as 938 students in the UAE were patients with Down syndrome and asked Al Owais what was the total number of patients with Down syndrome in the country.

The Minister of Health said the global average was now one in every 600 births, pointing out that the incidence had grown with increased maternal age and high number of children.

He reviewed the ministry’s efforts including pre-marital examination for would-be couples and marital medical services. Al Owais called for concerted efforts to better educate members of the public about the condition.

Hamad Al Rahoumi, a member from Dubai, asked Al Owais about the possibility of opening clinics for Quranic healing.

But Al Owais said the Ministry of Health has nothing to do with faith healing.

Al Rahoumi said preventing imams from practising Quranic healing has led people to turn to sorcerers.

Research Down Syndrome enters second year of national running program

from News Medical:

Research Down Syndrome (RDS), a nonprofit foundation that is among the leading sources for funding of Down syndrome related cognitive research, is entering the second year of its national running program, Race for the Extraordinary, to help increase public awareness and funding for Down syndrome research.  The mission of RDS is the development of safe and effective therapies to address the intellectual difficulties associated with Down syndrome.
 
Building on successful marathon and other race events during 2011 in major cities, including New York City, Chicago and San Diego, RDS is expanding its running program to greatly increase its research funding, and has been accepted as a charity partner in multiple marathons across the country. Shorter fun races are being organized as well.  "We are grateful for the enthusiastic support we received in events during 2011," states Dr. Robert Schoen, RDS President, "Our goal is to support persons with Down syndrome by significantly increasing our fundraising in 2012."

Advances in Down syndrome research have led to such progress as the recent initiation by Roche Pharmaceuticals of a Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. The RDS Race for the Extraordinary initiative will add increased support for such research.

In recent decades, improved health care, expanded education and community opportunities, and the support of families and advocacy groups has improved the quality of life for individuals with Down syndrome.  As a result, Dr. Schoen notes, "Over the past 30 years, the life expectancy of those with Down syndrome has more than doubled -- underscoring the importance of development of treatments that will assist this population to achieve and maintain independent living."

White House Disability Group Monthly Conference Call

Next White House Disability Group Monthly Conference Call - March 31

In order to keep Americans with disabilities and other interested parties informed about the Obama Administration's disability-related efforts, the White House Disability Group is hosting monthly calls to provide updates on issues such as key political appointments, employment, civil rights, health care and transportation, as well as introduce staff who work on disability issues in the federal government.

The next call will be held on Thursday, March 31 at 5:00 PM EDT. Please dial in five minutes before the scheduled call time. It will feature remarks from U.S. Secretary of Education Arne Duncan, and include introductions to other Obama Administration personnel.

Details for the call are as follows:

Dial in for listeners: United States: (800) 230-1059   

Title: White House Disability Call (use instead of code)