Your child and the Ehlers-Danlos syndromes
Valerie Burrows, Founder Emeritus, EDS UK
Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.
So, your child has Ehlers-Danlos syndrome (EDS). This news may have come to you as a great shock; or as relief that, at last, you have a name for all the problems your child has; or as confirmation of what you already suspected. However you receive the news, it will take time for you to adjust to it and then go on to face day-to-day living with EDS in the best possible way for yourself and your child.
One of the most important things you can do to help your child is to learn as much as you can about EDS, the type your child has and how severely he or she has it. This will help you determine the best way you can enable your child to live a full and happy life. It is wise to share your knowledge with family, friends, babysitters etc as well as with your child (at his/her level of understanding) so that he/she knows what limitations apply and how to help in case of injury.
This article has been written from my own childhood experience and that of my daughter’s. I have also read as many articles on EDS as possible. However my experience is of the classical type (cEDS, formerly known as type 1 or type 2) and, therefore, may not be totally relevant to your situation. It is important that you discuss your child’s problems with his/her healthcare professionals, school teachers etc and then use or discard the following information depending on its relevance.
A number of medical and caring professionals may be involved in your child’s care at different times. It is important to understand that, at present, there is no cure for EDS and that many professionals will not have met a case before. They too are in a learning situation.
A programme of physiotherapy may be advised to strengthen the muscles around the joints. It is important to ensure that these exercises in no way stress the joints.
Non-weightbearing exercises may be helpful, as may hydrotherapy. If joints are very weak, braces are recommended and care should be taken that they do not bruise or damage the skin.
Occupational therapists can give help showing how to do the jobs that, in the normal course, may stress the joints. Alternative types of fastenings, e.g. velcro, can be simple adjustments to make but save a lot of hassle. If a child is fearful of injury or over-emotional, counselling may be helpful, although emotional and psychological problems are not normally associated with EDS. A speech and language therapist can give advice if speech or language appears to be delayed or if your child has eating difficulties.
Parents can play a very important role in ensuring that their child grows into an emotionally whole adult. It is of paramount importance not to typecast your child in a specific mould. With the very best intentions this can be difficult, but it is essential that your child does not feel different or disabled in a way that can make him/her withdraw. It is imperative that family and friends do not label your child clumsy, accident-prone or awkward. Co-ordination can be a real problem with EDS and your child may continually fall over or drop things; fear of falling in case he/she is called clumsy will only make matters worse. Cosmetic disfigurement due to scarring and bruising can lead to hurtful teasing. Your child will need help to cope with this.
In the home
It is always better to prevent problems arising rather than have to treat accidents when they occur. Obviously it will NOT be possible to forestall all injuries and, for your own sanity, it is important that you do not blame yourself when accidents do happen. However, there are certain precautions that can be taken.
Books on the prevention of accidents in the home and online resources can be a valuable source from which to learn. You could contact the Royal Society for the Prevention of Accidents to ask for list of suitable resources.
Simple measures like avoiding scatter rugs, frayed edges on carpets, slippery ﬂoors and trailing wires will not only make your home safer for your child with EDS but for all members of the family. Handrails on stairs and baths are wise. When you buy furniture, consider whether any item may present a danger for your child. Accidents are less likely to occur with round tables than with square ones with corners to run into. Padded arms are much safer than wooden ones on chairs and sofas.
If possible, having a downstairs toilet will save your child having to go upstairs when a limb is painful or save you having to carry him/her up and down stairs if he/she is unable to walk.
Toys should be given the same attention to check whether they have sharp edges etc. This is where it is helpful if you have shared your knowledge about EDS with family and friends, especially if they are likely to give your child presents.
For your child’s emotional wellbeing it is important that he/she leads as normal a life as possible and this includes playing with other children and participating in certain sports. You will not be doing your child any favours by protecting him/her too much and stopping him/her playing as normally as possible with other children of his/her own age. One specialist put this in perspective by saying that the “majority of physical injuries could be treated and would heal but that psychological damage took a great deal longer to treat and heal”.
There are general precautions that can be taken. Elbow, knee and shin pads can help avoid damage to vulnerable areas if your child is prone to falling. This may be very easy in the cooler months when the pads can be hidden under long sleeves and trousers or when other children are wearing them for certain activities. Do carefully weigh up the benefit if other children are teasing your child and wearing them becomes a stressful emotional problem.
Try to discourage your child from ‘showing off’ his/her ability to over-extend his/her joints to friends or family. There is a risk of injury if the lax ligaments are stretched when the joints are not stabilised by adequate muscular control.
When guiding your child regarding other activities, it is always helpful to ask yourself, and others with the necessary knowledge, whether the activity could cause stress to one or more joints and whether accidental injury may occur. Playing certain musical instruments, e.g. the violin, may stress the joints where another instrument may be perfectly acceptable. Where there is only mild joint hypermobility and the skin is not fragile light gymnastics may be allowed; whereas for another child, gymnastics would be dangerous.
There is no reason to prevent your child joining an organisation such as Cubs or Brownies. Before your child starts, brief the person running the organisation about his/her limitations and the necessary action to be taken in the case of an accident. It may be helpful to explain a little about EDS to the other children attending in such a way that they will support your child rather than ostracise him/her.
Reassure those running the organisation that, while expecting them to try to prevent your child having an accident, you are aware that accidents do happen and you will not ‘blame’ them. Initially it can be a frightening responsibility for someone not conversant with EDS and you want them ‘on your side’.
Contact sports such as football, netball, rugby and hockey are not recommended for any child with EDS. Wise parents will endeavour to steer their child towards less demanding sports. Swimming is ideal as it is not weight-bearing and can help strengthen muscles, therefore, helping to stabilise weak joints. The child should not try to hold his/her head up out of the water, though, as this can place undue stress on the neck.
Before your child starts school or changes school it is advisable to make an appointment to discuss your child’s welfare and needs. Encourage the staff in such a way that they are inspired to help your child rather than be over-anxious about him/her. Take along basic literature about EDS so that they will know what problems there may be and have a ‘plan of action’ in the event of an accident. Explain that it may be necessary to send home schoolwork for your child if he/she is in hospital or recuperating at home after an accident. Teachers must be encouraged to ensure that teasing and bullying do not take place. Class discussions on disability in general can be most helpful to all pupils with the emphasis on the need for understanding, tolerance and sympathy for all with disabilities.
It may be helpful to ask to speak to fellow pupils to encourage their understanding and support for your child’s specific difficulties. Your child needs to feel he/she is a worthwhile member of the community. He/she may not be able to participate in one activity but may excel in another. Always look for alternatives. Be positive, encouraging others to be the same.
If you believe that:
- a) Your child has special educational needs (SEN) because of, say, impaired mobility, weak hand control, poor co-ordination, frequent hospitalisation or low attendance due to bad health;
- b) Their SEN are not being properly met by the provision of enough specialist teaching or practical equipment (e.g. suitable seating, a word processor),
you then have the right to ask the Head of your child’s school to initiate the process of statementing your child’s SEN. He/she must refer the child to an Educational Psychologist, who makes a recommendation to the Special Needs Panel of your Local Education Authority (LEA). Your child’s SEN will be fully assessed by the Panel. If a Statement of SEN is issued, the LEA must meet those needs in full. Statementing is a long, slow process. It should be started as soon as you are sure that it is right for your child.
Ehlers-Danlos syndrome does not cause learning difficulties. However, in certain circumstances, these may occur. For instance some children with EDS are born prematurely and these children may experience the same delays that can affect any other premature baby. Equally children who have to spend periods of time at home or in hospital when he/she should be at school, may require extra tuition to help them catch up with their peers.
Speech and hearing problems are occasionally associated with EDS. However, because a child has EDS, it does not mean that he/she cannot have a totally separate medical problem. If your child exhibits symptoms that do not appear in EDS literature, the other problem must be diagnosed so that this, too, may be treated in the best possible way.
Find a balance between pandering to your child and listening to genuine grumbles. A child may regularly complain about something, e.g. that being firmly dried on a towel after bathing is painful. This may be the case so sort out an alternative towel.
Be aware that, due to injuries and bruising, you may be accused of child abuse. Respond in a positive manner and explain about EDS calmly. This may even be a time for heightening the person’s awareness of EDS and saving someone else from the same accusation in the future.
Your primary aim should be to raise your child to be a well-adjusted, self-sufficient adult, avoiding unrealistic expectations. Encourage a good education. Your child may need to rely on brains, not brawn. Above all things try to enjoy your child and the special challenges that he/she brings.