Prenatal Diagnosis of Down Syndrome: Delivering Results in our New Age of Genetic Testing

A webinar version of a presentation by Dr Brian Skotko, Co-director, Down Syndrome Program, Massachusetts General Hospital, 16 December 2016 (62m 17s)

In this presentation, Dr. Brian Skotko reviews the latest advances in prenatal testing for Down syndrome. He further reviews the evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics, American Journal of Obstetrics and Gynecology, and American Journal of Medical Genetics.

• Brian Skotko's You Tube channel and website

Dr Skotko's approach is congruent with the DSi position statement:

Down Syndrome International: Position Statement on Prenatal Testing

... DSi asserts and defends the right of a woman (or a couple) to information about the human rights and potentialities of children with Down syndrome. 

DSi encourages a balanced and informed approach to the use of prenatal tests by government policies, the professionals involved and all family members. 

DSi contends that voluntary screening should be available to all pregnant women on request and the decision to undergo testing has to be made by the pregnant woman (or couple). 

BUT, that at the time of testing, easily understood information MUST be provided that is up-to-date ...

... This information MUST be provided in an unbiased way by well trained professionals who understand their ethical responsibilities as well as having good communications skills and up-to-date information. At the same time, potential parents should be directed to further sources of information ... read the whole statement here.

Federal Budget 2017: Down Syndrome Australia commentary

Budget Night 2017-2018

9 May 2017

Down Syndrome Australia's CEO, Dr Ellen Skladzien provides this useful summary of tonight's Federal Budget, on items most relevant to Australians with Down syndrome and their families:

The most positive news for the disability sector in the budget was the decision to provide full funding to National Disability Insurance Scheme (NDIS) through an increase in the Medicare Levy of 0.5 % from July 2019.  This will provide important funding for the Scheme going forward. It is likely to be controversial as it is basically a tax increase- but provides ongoing funding for NDIS and security for the scheme going forward.

One area of concern in the budget is a funding cut of $12 million to the Information, Linkages and Capacity building component of NDIS.  This is funding that supports organisations, like Down Syndrome organisations, that deliver information, referrals and peer support to people with disability. It is also the part of the scheme designed to assist people with disability who are not eligible for an individualised NDIS package of support. The Government has rationalised this by indicating it is due to WA not joining the national scheme.  However, given that the current level of ILC funding is extremely low compared to the required level of support required in the sector, it is disappointing to see this cut.

Other key budget measures for disability include:

• $33 million dollar package to support aged care and disability workforce growth
• $209 million to establish the Independent NDIS Quality and Safeguards commission
• Investment in Disability Employment Services program over the next 4 years including funding to index payments, funding attached to individuals rather than service providers, and a trial to provide DES to children with a disability in their final years of schooling.
• Changes to the residency requirements for the DSP and age pension.

There are also a range of health measures which will potentially have a positive impact on people with Down syndrome including:

• Lifting the freeze on the indexation of the MBS and reversing the removal of bulk-billing for diagnostic imaging and the increase in PBS copayment and related charges
• $165 million mental health package including $80 million for community psychosocial services
• Investment in health research
• Decision not to privatise Australian Hearing

There was also significant investment in education taking on the Gonski funding model.  This was announced in the lead up to the budget and has been somewhat controversial due to concerns about decreased funding to some private schools.

Overall there are some really positive outcomes; however, Down Syndrome Australia will continue to monitor the ILC situation- particularly if WA changes their approach to NDIS.

Latest issue of International Journal for Direct Support Professionals: Understanding Pain

OUCH! How Understanding Pain can Lead to Gain when it Comes to Supporting Those with Developmental Disabilities
Lara M. Genik, Tamlyn Freedman-Kalchman, C. Meghan McMurtry, and Yona Lunsky, International Journal for Direct Support Professionals,  Vol 6 #5, May 2017

... For many years, people have wondered if individuals with DD experience less pain, more pain, or experience it differently than those without DD. Some people even wondered if those who engage in self-injury didn’t feel pain. Researchers have been trying to find out the answers to these questions, but still aren’t totally sure. We do know that people with DD may respond more slowly to pain and express it differently than those without DD. We also know that even people who self-injure can feel pain. And most importantly, we know that true insensitivity to pain is extremely rare. So, as direct support professionals we should always assume that the people we support can feel pain ...

• The subscription to this Canadian journal is free. Email the editor, Dave Hingsburger at dhingsburger@vitacls.org to subscribe.
• Back issues are available to download here

Women’s Health Learning Circle

Image description: text reads 'The Women's Health Learning Circle' Family Planning NSW is starting a Women’s Health Learning Circle for women with intellectual disability aged between 45-64 years of age. Image description: A woman in a blue top, smiling, looking up to her left. The Learning Circle will be a place for women to learn about their bodies and the changes they will experience as they age. The Learning Circle will run once a week for four weeks and be led by experienced reproductive and sexual health educators. If you know anyone who would be interested in attending The Learning Circle please forward the information on to them. Places in The Learning Circle are limited so it is important people register to attend the group. Some of the things you will learn about are: menopause health checks for you private body parts relationships how to keep your body healthy The Women's Health Learning Circle will meet once a week for 4 weeks. Where: Family Planning NSW,  328 - 336 Liverpool Road, Ashfield When: 2.00 - 4.00 pm Thursday 8 June 2017 Friday 16 June 2017 Thursday 22 June 2017 Friday 30 June 2017 If you would like to be part of this group contact: Abi Monaghan P: 02 8752 4388 E: healthpromotion@fpnsw.org.au It is important to contact us before 2 June if you want to be part of this group.

What your local MP can do now about Deadly Disability Discrimination

The Advocacy Team at NSW Council for Intellectual Disability is calling for community follow up action to last month's Parliamentary Forum on the Deadly Cost of Disability Discrimination in the NSW health service for people with intellectual disability:

Michael Sullivan (Chair NSW CID), Fiona McKenzie
(Vice Chair NSW CID) and NSW Minister for Disability
Services, Hon Ray Williams

We thank both the Minister for Disability Services, Hon Ray Williams, and the Shadow Minister for Disability Services, Hon Sophie Cotsis, for both speaking at the Forum.

We have told all NSW MPs:

• Almost 40% of people with intellectual disability are dying from preventable deaths in NSW
• People with intellectual disability are dying on average 27 years younger than the general population
• Ignorance, inadequate training and discrimination within our health services are key reasons this is happening

Now we have an urgent request for our MPs: 

The NSW Government’s Ageing, Disability and Home Care (ADHC) agency runs specialist health care services. These services help people with intellectual disability get the specialist health services they need. However instead of maintaining and expanding these services, the NSW Government is slowly closing them down.

Next year ADHC itself will close down and the money ADHC uses to fund these services will go to the NDIS.

We believe NSW Health should take responsibility for funding these services from next year, but so far Health Minister Brad Hazzard has been silent on this issue. The health outcomes are already bad for many people with intellectual disability. Closing down these services will make them worse. We need a commitment from all MPs that they will strongly advocate for NSW Health to maintain and expand these ADHC specialist health services.

Please help us keep up the pressure and take the following actions: 

• Phone, email and arrange to meet your local MP, tell them about the unacceptable high number of preventable deaths for people with intellectual disability, and ask them to support the maintenance and expansion of these important ADHC specialist health services.

• Phone and email the Minister for Health Hon Brad Hazzard and the Shadow Minister for Health Hon Walt Secord and ask for their commitment to the ongoing funding of the maintenance and expansion of these ADHC specialist health services.

You can find a guide to emailing and phoning MPs and all their contact details in this blog about the parliamentary forum. 

If you need help in preparing for your meeting with your local MP we can run a workshop for you and your family, friends and colleagues either face to face or remotely. Contact us at advocacy@nswcid.org.au

We will have the videos from the Parliamentary Forum available to view shortly. In the meantime we ask you to contact your local MPs and help us end Deadly Disability Discrimination.

Intellectual Disability Healthcare: online courses from University of Queensland

The University of Queensland now offers three courses in its online program Intellectual Disability Health Care. Course instructors are Prof Nicholas Lennox and Miriam Taylor from the Queensland Centre for Intellectual and Developmental Disability, University of Queensland:

Able-Minded - Mental Health and People with Intellectual Disability
Gain an understanding of mental health issues and ethical decision-making for people with intellectual disability.

Through my Eyes – Intellectual Disability Healthcare around the World
Learn, from personal stories, the daily life and challenges faced by those with intellectual disabilities.

Well and Able - Improving the Physical Health of People with Intellectual DisabilityLearn how to help those with intellectual disability achieve better health.

NSW parliamentary forum on health discrimination

Call to action from NSW Council for Intellectual Disability:

 Help us strike while the iron is hot to keep disability health in the political spotlight. 

Thanks to your support we have been able to organise a Parliamentary Forum, which will focus on the very high rates of preventable deaths for people with intellectual disability. The forum will be held on Friday 31 March at 12 noon in Parliament House.

The Minister for Disability Services, Hon Raymond Williams will address the forum, as will the Shadow Ministers for Health and Disability.

Your local MP has received an invitation, but we need your voice to ensure they attend the event. The more politicians we have there, the more pressure there will be on the government to act. 

The event is little more than a week away, so we need you to phone or email them right now, to lock it into their calendar. 

• Guide to how you can contact your MP 

Health matters

Twenty Things I Want My Health Care Provider to Know

A series of videos from the Adult Down Syndrome Center, published on their Facebook page. The quickest way to reach them is via this link, or via the 'Videos' tab in the left column of the ADSC home page :

 Before We Get Started - published October 2016. A 'welcome to the series', includes a brief history of the Adult Down Syndrome Center. (3m 6s)

It Is More Than Just Language - published 13 February 2017. It is about language but it is also a philosophy on interacting with people with Down syndrome. (1 m 10s) 

Common Characteristics of People with Down Syndrome - published 16 February 2017. All is not Down syndrome. (3m 33s) 

Life Expectancy and Two Syndromes - published 19 February 2017. People with Down syndrome are living much longer than in the past and despite the same genetics from years ago, the lives of people with Down syndrome look much different than they did in the past. (7 m)

• More health related information and resources are available from the Adult Down Syndrome Center's website. 

Keratoconus and Down’s syndrome

Stephanie Campbell, Down's Syndrome Association (London), 3 January 2017
Keratoconus is a condition in which the cornea, the transparent ‘window’ at the front of the eye, grows abnormally thin and into a cone shape, causing distorted vision.

... Until recently, there was no treatment for early stages of keratoconus, and nothing to be done about it until vision was affected, when contact lenses can be a real help. In cases of severe progression, scarring of the cornea meant that a corneal transplant was the only means of providing reasonable vision.

Now, there is a new treatment becoming available, called collagen cross-linkage therapy that can halt the progress of the abnormal growth and prevent sight deteriorating ...

• Keratoconus and Down’s syndrome: Rachel’s story,  DSA (UK), 27 January 2017

Lack of Specialist Clinicians Failing Australians with an Intellectual Disability
Simon Wardale, Probono News, 3 October 2016
Bluntly speaking, complex and challenging behaviours are not very well understood, even within the disability sector, and that situation is borne out by the training – or lack thereof – available for Australian practitioners ...

Jackson Lab Helping 11-Year-Old With Rare Disease In Search For Cure

Stephen Singer, Hartford Courant, 3 January 2017
... At age 4, Talia Duff, who was born with Down syndrome, began to slowly lose motor milestones that were hard to achieve initially. Doctors believed her motor skills were delayed because of her Down syndrome ...

Petition to end preventable deaths in NSW: last few days to sign

You can still sign this petition to help address the terrible and sometimes fatal discrimination experienced by people with disability in health and hospital settings, before this Friday when Christine and Erin will present our petition in person to the NSW Minister for Health, Brad Hazzard:

NSW Council for Intellectual Disability - petition to the NSW government

... NSW Council for Intellectual Disability is calling for proper investment in the health of people with intellectual disability so that we can end the terrible number of Australians with intellectual disability dying from preventable illness. 

We need the NSW State Government to commit $50 million per year for 10 years to put an end to the high numbers of preventable deaths for people with intellectual disability in NSW ...

• Previous post on recent research and commentary on preventable deaths of people with intellectual disability in NSW

Preventable deaths of people with intellectual disability in Australia: research, media, petition to government

People with intellectual disabilities twice as likely to suffer preventable death, study finds

Elise Worthington, ABC News, 8 February 2017

... Research released in the medical journal BMJ Open on Wednesday reveals a disturbing pattern of unnecessary deaths in the Australian health system. 

Researchers at UNSW found people with an intellectual disability are twice as likely to suffer a potentially avoidable death compared to the general population. 

"We found that one in three deaths in people with an intellectual disability was from a potentially avoidable cause," psychiatrist and lead author Julian Trollor told 7.30 ...

• 7.30,  ABC TV, 8 February 2017 (8m 42s video, transcript)

Why people with intellectual disabilities are dying avoidable deaths

Kate Aubusson, Sydney Morning Herald, 8 February 2017

Professor Julian Trollor first noticed something was amiss when he was trawling through death certificate data for people with intellectual disabilities. Over and over again the underlying cause of death was listed as the disability itself, regardless of whether the patient had died of an infection, cancer or a heart attack.

"I thought, this just doesn't seem right," Professor Trollor said. A person with down syndrome who died of respiratory failure caused by pneumonia would likely have their underlying cause of death coded as down syndrome in population records. 

"Down syndrome itself doesn't cause the death. Anyone else in that scenario would have their underlying cause of death coded as pneumonia ...

The needless deaths of people with intellectual disability must be urgently addressed

Professor John McMillan and Steve Kinmond, ABC News, 9 February 2017

... we recognise that the experience of people with intellectual disability in NSW is not unique.

We are keen to see a national effort to close the gap in the disparity in health outcomes between people with intellectual disability and the general population. The National Disability Strategy — and strong governance arrangements for the implementation of the strategy in states and territories — provides a useful mechanism.
It is simply unacceptable that people with intellectual disability in our community are dying from preventable causes at over twice the rate as other Australians. We must close this gap.

• Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.

Research report - the full text of the report is available online, without charge:

... Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID.

Cause of death and potentially avoidable deaths in Australian 
adults with intellectual disability using retrospective linked data 
Julian Trollor, Preeyaporn Srasuebkul, Han Xu, Sophie Howlett 

BMJ Open, 7 February 2017 

NSW Council for Intellectual Disability - petition to the NSW government

... NSW Council for Intellectual Disability is calling for proper investment in the health of people with intellectual disability so that we can end the terrible number of Australians with intellectual disability dying from preventable illness. 

We need the NSW State Government to commit $50 million per year for 10 years to put an end to the high numbers of preventable deaths for people with intellectual disability in NSW ...

Improving healthcare for people with intellectual disability: UQ online course open for registration

From the Queensland Centre for Intellectual and Developmental Disability, University of Queensland:

A world-first series of free online courses designed to improve healthcare for people with intellectual disability is again open for registration.

The ABLE XSeries, developed by a team of online learning specialists from The University of Queensland’s UQx and The Queensland Centre for Intellectual and Developmental Disability (QCIDD), had reached a large and responsive audience since its initial release in March 2016, said QCIDD Director Professor Nick Lennox ... read more about the course and how to register here

Sean Fisher is the face of the ABLE XSeries. 

Predicting and Preventing Leukaemia in Children with Down Syndrome: The PreP 21 Study

The Board of Down Syndrome NSW supports participation in this research project, coordinated by Sally Byatt at Sydney Children's Hospital, Randwick:

The Kids Cancer Centre at the Sydney Children’s Hospital Randwick in NSW is currently running an exciting new Australian study called Predicting and Preventing Leukaemia in Children with Down Syndrome (The PreP 21 Study).

The aim of The PreP 21 Study is to devise a method of predicting which children will later develop leukaemia. If successful, this study may form the basis for a later therapeutic trial to prevent babies with Down syndrome developing leukaemia, with enormous potential impact on the many other types of child cancer which have a prenatal origin.

The researchers would like to invite children in NSW with Down syndrome between the ages of 0 – 2 (from birth up to the third birthday) to have the chance to take part in the study. Participants will be followed up until the age of 4 years.

It is anticipated that the study will become available for ACT residents in the near future.

If you are interested in having your child take part in The PreP 21 Study or would like further information, please contact the study by:

Telephone: 0410 346 294
Email the Study Co-ordinator, Ms Sally Byatt: sallyanne.byatt@health.nsw.gov.au
Or visit the study website

Inclusion Australia: People with intellectual disability need quality mental health services not to be ignored

Posted by Inclusion Australia, 15 November 2016:

The Commonwealth Government has just release the National Mental Health Plan for comment, and people with intellectual disability are not even mentioned in the 77 page draft. This omission defies belief in view of the terrible mental health disparities experienced by people with intellectual disability and the highlighting of the need for action on these in recent years. 

We urge you to speak up for people for people with intellectual disability! 

See www.health.gov.au/internet/main/publishing.nsf/Content/mental-fifth-national-mental-health-plan for how you can have your say – by going to a consultations meeting, filling in a feedback survey or making a submission.

Read the full Inclusion Australia post for more information on why people with intellectual disability must be included, and priority arguments.

Going to hospital: share your experience for research

NSW Council on Intellectual Disability is doing research for the NSW Government that you might like to take part in:

The NSW Government has asked us to interview people with intellectual disability who live in group homes about their experience being in hospital. 

Participants will be given a $75 gift card for their time. Lunch will be provided. We can interview the person where they live or at a place suitable to them. 

We can pay for the cost of a support worker identified by the participant if they request one to be present during the interviews. 

Click here to download the easy read information sheet.

Health matters

Improving Mental Health in Children with Autism and Intellectual DisabilityBelinda Ratcliffe (guest blogger), NSW Council on Intellectual Disability, 26 October 2016

Did you know about 70% of children with Autism have mental health issues like depression, anxiety or challenging behaviour?

Positive Cardiometabolic Health for People With Intellectual Disability resources

3DN at the University of NSW has developed a set of  resources and tools on Cardiometabolic Health for People with Intellectual Disabilities,  including postcards to take to your doctor.

Cardiometabolic health of people with intellectual disability differs from members of the general population. The resources aim to inform medical practitioners, those who work with or care for people with intellectual disability, people with intellectual disability, and prescribers of psychotropic medication on the affects on specific health conditions of people with intellectual disability.

• Click here to download resources on a range of topics related to cardiometabolic health.

What a patient with a learning disability would like you to know
Emily Smith, British Medical Journal 2016; 355: i5296, 5 October 2016
Emily Smith has Down’s syndrome and is an Expert by Experience at the University of Nottingham. After a visit to an emergency department (A and E), she was referred to her general practitioner. Here she contrasts the interactions she had with the different healthcare professionals ...

Health matters

Trampolines
Adult Down Syndrome Center, 21 August 2016 (on Facebook)

We periodically get asked about the use of trampolines by people with Down syndrome. Recreational use of trampolines is associated with significant injuries.
The American Academy of Pediatrics recommends against the use of trampolines for recreational use. The policy statement on trampolines  reports that "Many reports have revealed that head and/or neck injuries accounted for 10% to 17% of all trampoline-related injuries, and 0.5% of all trampoline injuries resulted in permanent neurologic damage". 

The laxity of the joints often found in people with DS could put them at even higher risk. Of particular concern is the possibility of neck injury. Atlanto-axial instability (the slippage of the first vertebrae in the neck on the second) is more common in people with DS. A blow to the head or a sudden jarring movement of the head that might occur on a trampoline could cause spinal trauma. 

Would a normal lateral cervical spine (neck) x-ray guarantee that a neck injury would be avoided with participation on a trampoline by a person with DS? People without DS who have normal cervical spines can have significant spinal cord injuries on a trampoline. Furthermore, we know that normal x-rays don't predict lack of vulnerability to cervical spine injury for people with DS in some other situations such as when under anesthesia. Caution is recommended for all people with DS when under anesthesia because movement of the head/neck under anesthesia has been associated with significant injury to the spine even with a normal neck x-ray. As in people without DS, even with a normal lateral neck x-ray, spine injury is still a potential concern for people with DS who participate in recreational use of a trampoline.

Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome
Vee P Prasher, Hassan Mahmood, Madhumanti Mitra, Dove Press, 20 September 2016
... This literature review aimed to look at the management of DAD (dementia in Alzheimer's disease) in people with DS. The management of dementia is holistic ... The management of DAD in people with DS does present with a number of challenges. However, if clinicians follow good clinical practice guidelines, optimum care can be provided to these under-resourced members of the community. Future research findings from the general population should be applicable to the DS population and will hopefully improve future management and diminish any challenges.

• Dove Medical Press, based in the UK, publishes scientific and medical research with open access. A copy of the full text of this article, published in the journal Degenerative Neurological and Neuromuscular Disease, Volume 6, 2016, can be downloaded for personal use - the link is located below the abstract.

Do you know someone who has a disability and has been affected by breast cancer?
Breast Cancer Network Australia (BCNA) wants to provide better information and support to people with a disability affected by breast cancer, their families and supporters.

To help us understand people’s experiences, we would like to talk to:

• people with a disability who have had breast cancer

• family members, carers or support workers of a person with a disability who has had breast cancer

• people who have had breast cancer and are family members or carers of a person with a disability

• More information here, from BCNA

Educational videos from the Adult Down Syndrome Center

First in a new series of short videos designed to support people with Down syndrome to stay healthy:

A Healthy Pace for Eating

Adult Down Syndrome Center, 13 September 2016 2016
Being able to learn about and participate in our own health promotion is a key factor in improving anyone’s health. This educational video, created by the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. aims to help persons with Down syndrome learn how to keep themselves healthy by establishing good eating habits.

To learn more about the Adult Down Syndrome Center, visit the website. Our videos are now available on Facebook, our web page and on You Tube. Watch for more videos soon.

Recent news on Alzheimer's and Down syndrome

Adult Down Syndrome Centre posted about Alzheimer's disease and the possibility of a vaccine on 4 August 2016, via their Facebook page:

Could a vaccine prevent and/or treat Alzheimer disease?  There is interest in this topic.  Could it be given to people with Down syndrome? 

There is a study in San Diego looking at safety of the vaccine in people with Down syndrome. 

We have started discussion about how the ADSC could be involved in the next phase of study that would focus on efficacy of the vaccine.

• Is a vaccine that protects against Alzheimer’s on the horizon?, Julie Nakis, Health eNews (Advocate Health Care), 28 July 2016

Aging Poses New Challenges For Those With Special Needs

Vikki Ortiz Healy, Chicago Tribune/TNS,  1 August  2016

... when the 56-year-old woman with Down syndrome began forgetting her work schedule, becoming disoriented around campus and feeling too confused to do her job in the mailroom, administrators at the Catholic facility moved her to a new program designed to meet a need that advocates say will only be more pressing in the years ahead: caring for people with disabilities as they age ...

(US) Alzheimer's Association issues $7M challenge to scientists to speed drug discovery

Global Down Syndrome Foundation, 2 August 2016

... “The importance of the 'Part the Cloud Challenge' from the Alzheimer’s Association cannot be overstated,” said Dr. Potter, who is director of the Rocky Mountain Alzheimer’s Disease Center and professor and director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine. “The million dollars, with a potential for another $3 million after two years, will certainly propel novel research forward towards a therapy for Alzheimer’s. For my research, the hope is that Leukine, an FDA-approved drug, may slow or even prevent the progression of Alzheimer’s disease. That would be a home run for everyone.” ...

Health matters

Action on the Turnbull government commitments on healthNSW Council on Intellectual Disability eNews, August 2016

As reported in our blog (click here) the Coalition, Labor and The Greens all made useful election commitments on the health of people with intellectual disability.

We have now seen the first actions on the Government’s commitments in new mental health guidelines issued to Primary Health Networks by the Department of Health. Some of the guidelines point out the need to specifically consider people with intellectual disability in consultations and design of programs. 

The guidelines are here. 

We also now have constructive relationships with some key people in the Department of Health and Health Minister Ley has agreed to meet with some local parents in her electorate to hear about their experiences with the health system. 

All of this is just a start but a big step forward from where we were with the Department of Health six months ago.

Onychomycosis -Toenail Fungal Infection 
Amanda Wojciechowski, Adult Down Syndrome Center,11 August 2016
Onychomycosis or toenail fungal infection is common among individuals with Down syndrome (DS). Toenail fungal infections occur due to the weak immune system of individuals with DS but also are more likely to proliferate if one has a minor skin or toenail injury, dry cracked skin on the toes or sweaty feet due to prolonged closed-toe shoe wear ...

• This article was first published on the Adult Down Syndrome Center Facebook page 1(1 August 2016) - a great source of new health information, and reminders about well known health matters. The paper cited above has been added to the Center's website as well.

Hidradenitis suppurativa (HS) and Down syndrome (DS): Increased prevalence and a younger age of hidradenitis symptom onset

George Denny and Milan J. Anadkat, Journal of the American Academy of Dermatology, September 2016 (published online 22 August 2016)
Hidradenitis suppurativa (HS) occurs in approximately 1% of the general population.1 It is characterized by recurrent inflammatory nodules, sinus tracts, and scarring, most commonly in the axilla and groin. The origin is unknown, but is most likely related to inflammation and immune dysfunction, combined with extrinsic factors.2 The relationship between HS and Down syndrome (DS) was noted in 1977 by Dvorak et al.3Since then, scattered case reports have been published but the mechanism underlying this association remains unidentified. Details regarding the relationship between HS and DS, such as effect on disease incidence and age of onset, are also lacking in the literature ...

• The full text of the article is available free online

Resources on hearing

This is Hearing Awareness Week in Australia. 

Conductive hearing loss is common in children with Down syndrome (and other forms of hearing loss can also occur), and most families are well informed about its management and importance (in the development of speech, for example). All newborn babies in Australia are now screened for hearing loss.

Hearing Loss in Children with Down Syndrome is a comprehensive fact sheet published by the Sydney Children's Hospitals Network, available online and to download as a .pdf file.

You will also find useful resources for providing information to other people in your child's life on the Hearing Awareness Week website, under the 'resources' tab, including a brochure about conductive hearing loss.