Autoimmunity in people with Down’s syndrome

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We are a group of doctors and scientists at Bristol Universitywho have been very fortunate to work with people with Down’s syndrome looking at some of the conditions that affect them. We have recently started a study called the Feeding and Autoimmunity in Down’s Syndrome Evaluation Study FADES study looking at feeding and autoimmunity in Down’s syndrome.
We hope this blog will be of help and interest to you. It starts to explain how autoimmune conditions may affect people with Down’s syndrome.

Autoimmunity in people with Down’s Syndrome

People with Down’s syndrome are at increased risk of developing autoimmune conditions such as diabetes, thyroid and coeliac disease (a condition affecting the gut). Most people with Down’s syndrome will not be affected by these conditions, but because of the increased risk it is important that you are aware of signs to look out for that may suggest that you or the person you care for should discuss further with a health professional.
There are 2 types of diabetes, type 1 and type 2.Children with Down’s syndrome are more likely to develop type 1 which is treated with insulin. It is important that diabetes is diagnosed and treated early. The symptoms of type 1 diabetes are described as the 4T’s (Diabetes UK)
Toilet – Going to the toilet a lot, bed wetting by a previously dry child or heavier nappies in babies
Thirsty – Being really thirsty and not being able to quench the thirst
Tired – Feeling more tired than usual
Thinner – Losing weight or looking thinner than usual
If you or the person you care for has these symptoms you should go straight to the doctor as it is very important that diabetes is treated quickly.
People with Down’s syndrome should have regular blood tests to check that they do not have any thyroid problems. The thyroid gland produces hormones that help control how fast the body uses up energy, to help maintain the body’s temperature and have an effect on growth. Symptoms of an under active thyroid gland vary but include feeling cold, tiredness, constipation, dry skin and hair.
Every baby has their thyroid function checked in the newborn period.  Those with Down’s syndrome should be checked again at a year and then once a year after that. The test is either done by a small finger prick or a normal blood test
By the time a person with Down’s Syndrome is a teenager 15 – 20% will have an under active thyroid gland; this can be treated with medicine that replaces the thyroid hormone.
Coeliac Disease
In people with Coeliac disease the gut reacts to gluten which is contained in certain foods (mostly wheat, barley and rye). People with Down’s syndrome are more likely to develop coeliac disease than the general population, although it is still uncommon. The symptoms of coeliac disease can vary, but include tummy pain, a bloated tummy, tiredness and weight loss. Coeliac disease is treated by a special diet which does not contain any gluten.
Currently people with Down’s syndrome are not routinely tested for coeliac disease, but tests should be considered if there is concern about any of the possible symptoms. If you are concerned that you or the person you care for has coeliac disease you should discuss this with your doctor.
If you are interested in finding out more about the FADES study which is being run at the University of Bristol please go to FADES study. We are looking for new parents of babies under 8 months to find out more about feeding and health in the first few years of life – LINK??

The FADES Study Team

Dr Georgina Williams – I am a Paediatric Registrar currently doing a clinical PhD in Child Health. I trained and worked in London until 2011 when I moved to Bristol. My research interests are in Down’s syndrome, diabetes and endocrinology.
Professor Julian Hamilton – Shield – is a Professor of Diabetes and metabolic endocrinology at the University of Bristol. He undertook his clinical training in Bristol and the Hospitals for Sick Children, London. He is an honorary consultant paediatrician at Bristol Royal Hospital for Children. He is deputy director of a National Institute for Health Research Biomedical Research Unit in Nutrition (NIHR Bristol Nutrition BRU) at Bristol researching ‘Optimising nutrition in children with chronic disease to improve health outcomes’ and has research in the causes and treatment of all forms of childhood diabetes. He has previously published papers on Down’s syndrome and Diabetes together with Dr Kathleen Gillespie.
Dr Kathleen Gillespie – is a molecular biologist with a long term interest in the genetic mechanisms underlying autoimmunity. She joined the Diabetes and Metabolism Unit, University of Bristol in 1998 having worked previously as a post-doctoral researcher at the Academic Renal Unit in Bristol and at the Department of Medicine University of Cambridge.
Posted in Research

I Love Makaton

by Donna Lynch, Regional Manager, DSA Northern Ireland

Makaton-training NI
Can we ever really understand what it must feel like to not be able to communicate?  Having grown up in a family with two siblings who had language difficulties (both siblings having Down’s syndrome), we as a family were more patient when they were trying to communicate.
We used gestures, body language and images when we got stuck, like “show me”. We found this worked really well as my two siblings drew images with their fingers or used all forms of their body language to their full potential. Often when communication was achieved I would think “Oh yes I get it, that was so clever how you tried to show me what you wanted”.  My siblings never failed to surprise me with their ingenuous ways of trying to be understood.
Having worked with and for people with learning disabilities all my life (I’ve worked at the DSA for the last 18 years),  I am always humbled at how much people want to participate in the world around them even though they may have many communication obstacles. From children to adults most people are enthusiastic about engaging with the world and want the opportunity and help to do so.
I love Makaton, it is an easy sign language used in conjunction with language to help develop speech.  In Northern Ireland we have had ten Makaton workshops for parents and professionals this year.
Why do I think Makaton fits perfectly with someone who has Down’s syndrome? A person with Down’s syndrome is often a strong visual learner, they model behaviour, they learn from hands on activities, they learn through repetition, they can remember auditory sequences, they enjoy praise, they need longer to process (symbols are excellent for this). When we want to teach, we must use the strengths of people with Down’s syndrome as they learn to read, write and develop language.
I have seen first-hand the advantages of Makaton to individuals and families. I have seen how communication for the individual has become a rewarding experience and one they want to keep trying. I have seen how parents have to be committed and persevere when using Makaton.
Makaton is life changing; it can remove obstacles for individuals and families.  I have seen the results:  that one human being can have a richer relationship with another because they are understood.

Makaton-training NI 2

In Northern Ireland we run Makaton workshops for stages 1, 2, 3 & 4. The training is open to all.
Full details & to register see:
More information see DSA Support and Training services
Posted in Northern Ireland, Training

New Housing Charity Offers Supported Living Tenancy in South Devon

HIP house

A brand new Housing charity offers a tenancy and opportunities for personal development in a 4 person shared house at 18 Torquay Road, Newton Abbot, South Devon for people with Learning Disabilities. Generous accommodation, including exclusive use of double bedroom, shared use of two bathrooms, shared use of two sitting rooms, kitchen/dining-room and laundry. Care support (including 7 nights sleep-in), and daytime development opportunities, provided by a CQC rated “outstanding” provider.
Applications welcomed from a fourth prospective tenant with eligibility for appropriate financial support and compatible personality with three founder tenants, for a happy, active, partially communal, household.
Younger age range preferred. Rent and other Housing costs within Housing Benefit limits.
HIP logo
Housing Independent People Limited (registered as a charity under number 1160664).
Applications of interest should be sent to Jacquie Roberts;
The Down’s Syndrome Association does not recommend any product or service. This article is for information only.
Posted in Supported Living

Hilton Hotel visit by Becky

Originally posted on Down 2 Earth Magazine Editor's Blog:

Hilton Hotel visit by Becky

this is  a Guest  blog about  Becky’s  work.

“In April I went to the Hilton Hotel. I went with the Project SEARCH at St Georges trainees, my tutor and job coach. I went on a mini-bus with a lovely driver to take us. It was a very long journey to the Hilton hotel; also it was a new experience for me on a motorway. It is a lovely journey to the hotel, the Hilton hotel is big and we checked into reception and meet with another Project SEARCH team!

I took a seat with two other trainees and waited whilst the others went to the toilet. I met a lovely lady called Clara, and another trainee called Reece gave us a tour. I saw other trainees working in the kitchen, the hotel was posh and clean. I went to lunch at Fat boy’s café; I had…

View original 166 more words

Posted in D2E Magazine Editor's Blog

Wills and Trusts

Making Provision for your loved ones

Leaving a will and paying for a solicitor to set it up when you have a child with Down’s syndrome is vital. There can be a fear of solicitors and their fees, however this is the time for getting the best advice you can afford, as you are setting up something important to safeguard the future of your child and give you peace of mind. 

Looking for a solicitor

When looking for a solicitor, check that they are STEP qualified (Society of Trust and Estate Practitioners).  It is worth paying for good advice. A solicitor should be able to give you a price over the phone and also tell you how long it will take to draw up the will and trust fund.  If they cannot, do not use them. The regulatory body is very strict, so if you are told it will take 3 weeks and it has taken 5, then you should not be billed for it.  Do not pay up front fees and make sure you are happy with the work before you pay.  Take a list of your assets to the meeting as it will save a lot of time.

The pitfalls of poor advice

Here are 6 things that parents routinely do which can have undesired consequences:
  1. Writing a will but excluding your child with Down’s syndrome. Many parents think that they can leave the money with their other children and that they can look after them. However, if there is no provision social services can bring a claim against the estate because provision has not been made. This means court fees and legal fees would need to be paid.
  1. Leaving it to another sibling with the proviso that they look after their brother/sister. If this sibling went bankrupt, then this money would be taken away. If they divorced, again the money would be taken into account in a divorce settlement.
  2. Leaving property to the child with Down’s syndrome– you need to look at how the property will be cared for and maintained as it can lead to a deputyship order costing around £2000.
  3. Setting up a discretionary trust fund without any letters of wishes detailing how the fund is to be run and what the beneficiaries likes and dislikes are.
  4. Not telling relatives that there is a trust fund set up. If they know about it, grandparents or other friends/relatives could then alter their own will to have money sent directly to the trust fund rather than the person themselves (if your child is on means tested benefits it can affect benefit if the money is paid to them directly). It doesn’t cost much to add this into a will.
  5. Leaving money directly to someone on means tested benefit. Their benefit may stop if it is above the prescribed limit of £16,000 or reduced if it is an amount between £6,000- £15,999. They will then have to use their inheritance to live on and pay rent. Once it has run down to below £16000, they will have to re-apply for all the means tested benefits, keep DWP and housing benefit informed of the decreasing capital so they can increase the benefits and also find someone to help them complete and understand the forms.

Setting up a Trust Fund

 You can set up a trust fund as part of your will and leave money in it for your child’s provision. You can set up a pilot trust by placing just £10 in it whilst you are alive. Money left by other relatives can go directly into this (they will have to state this in their will). You can name as many people as you want to be beneficiaries of the trust fund. In your will, you can make gifts and money gifts to friend and families. Once the gifts have been given, the funeral bill and utility bills taken, you are left with the residue which will form the basis of the trust fund.
The best kind of trust fund to set up is the discretionary trust fund or the disabled person’s trust fund. The disabled person’s trust fund recently changed and is now similar to the discretionary trust.  If inheritance tax will be an issue then look at the disabled person’s trust fund, if not, the discretionary trust fund is fine to set up.

Requirements of the Trust Fund

The discretionary trust fund requires a minimum of two trustees to run it and more than one beneficiary. You can name a charity as a second beneficiary if you have no one else to name in the trust. However, the more beneficiaries you have, the better. The trustees can be lay people, professionals -such as a solicitor or an accountant or a trust company.
If you have no one to operate the trust and need a third party, it is best not to use a bank because they currently charge 4% of the total value of the estate. There are other companies, for example charitable trusts, who charge less than half this amount and are also aware of the needs of people with learning difficulties.

Duties of the trustees

The duties of the trustee are serious and they are accountable for the running of the trust.  They have a duty to invest the money with a professional, independent financial adviser and should not invest the money themselves.  If they chose to invest the money themselves and lost some they would be fully liable and the trust would pursue them for the monies lost.  If it was lost through an independent financial adviser, the trustees would not have to repay the money.
The trustees exercise their discretion and decide how the money is spent. In the case of someone on means tested benefit, the trust pays for goods directly; this way it never passes to the beneficiary in a way that affects their benefit.
Set up correctly, the trust will not affect any benefits that your son or daughter receives. Along with the Discretionary trust fund you will need two letters of wishes.

Letter of wishes – two please!

  •  The first letter gives the pecking order of who is to benefit, so you would put the person you most want to benefit first. On their demise the money would pass to the second in line and so on.
  • The other letter gives the likes and dislikes of the child. This is really important because the trustees who run the fund may not know the beneficiary very well or at all if it is a trust company. In this second letter of wishes you can include information about their likes and dislikes, for example, if they like to go to a weekly football match or if they like to visit certain places etc.
This is a short introduction and in no way intended to replace professional legal advice.
Posted in Finance

The DSA is helping to shape new Additional Needs Code of Practice in Wales

Wales Education consultation

New legislation covering pupils with additional needs in Wales is anticipated to come into force from September 2017

Many of you will be aware of the long road being navigated towards a new Additional Needs Education Bill Wales. This process began as far back as 2008, with the publication of a consultation entitled “Statementing or Something Better”. The last 7 years have been spent reviewing the current legislative framework, piloting new ways of working and shaping the content of the proposed Bill, which was issued for formal consultation last year and is set to go before Welsh Assembly in June of this year. It is anticipated that the new legislation covering pupils with additional needs in Wales will come into force from September 2017.
The Down’s Syndrome Association, through our Wales Manager, Julian Hallett, has played an active role in helping shape the new policy documents. Through a consortium of Third Sector disability organisations in Wales (including NDCS, AFASIC, RNIB, SCOPE, Children in Wales and SENSE) Julian has been part of a Task and Finish Group facilitated by Welsh Government who have been advising policy makers on the structure and content of the Code of Practice which will set alongside the new Education Bill Wales when it comes into force.
Topics (which will hopefully find their way into the new Code) currently being discussed include:
  • Early interventions
  • Transitions across the ages from birth-aged 25
  • Shape of the new IDP (Individual Development Plan)
  • Roles and responsibilities of key parties including local authorities, school and SENCO
  • Provision of advice, disagreement resolution and Tribunals in Wales
Read more about this process to date (including responses to the consultation) here
The group is due to complete its work plan by the end of the summer.
For more information about all DSA activities and projects in Wales, please visit our website.
Posted in Education

World Down Syndrome Day Football Festival: 1 April 2015

World Down Syndrome Day Football Festival 1 April 2015 2a

On Wednesday 1 April, 50 people with Down’s syndrome gathered at the incredible American Express Elite Performance Centre in Lancing, Brighton to take park in a football tournament hosted and delivered by ‘Brighton and Hove Albion in the Community’ coaches and Amex volunteers.

The players (many of whom came from our existing DSActive sessions) enjoyed an introduction to football through various coaching stations including shooting and taking penalties against the Brighton mascot Gully! Players of all abilities rallied with the coaches, practiced their football skills and took part in football matches.  Some players enjoyed the chance to demonstrate skills they have been learning at existing football sessions, others experienced the enjoyment of football for the first time with expert guidance.
The skills the fantastic coaches and volunteers helped the players with were quickly mastered and put to the test in the second half of the afternoon’s activities: fun, competitive football matches. Every player thoroughly enjoyed playing with their team and competing against other DSActive squads.
After many closely fought battles of individual skill and team spirit, the tournament came to an end with QPR managing to remain unbeaten. They had fantastic flair in attack and remarkable resilience in defence and at the end of the day they proudly hoisted the trophy into the sky before taking it back to West London.

World Down Syndrome Day Football Festival 1 April 2015 3  World Down Syndrome Day Football Festival 1 April 2015 1

There was however a great surprise for all of the teams: Brighton Manager Chris Hughton and Brighton defender Bruno, kindly offered their time to present the trophies and medals to all the players who participated in the tournament.  It was a perfect end to a fantastic day of football – just one of many more to come!
Posted in DSActive