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This page provides information for employers, teachers, special needs education coordinators (SENCo) and other professionals who work alongside someone with Galactosaemia. This page gives an overview of Galactosaemia and the common cognitive and emotional difficulties that can affect young people living with this condition. It offers some strategies to support the person with Galactosaemia, and sources of further information.

It has been written by Lisha Shiel, Trainee clinical psychologist, Lynne Aitkenhead, Clinical psychologist, and by Bryony Gemmell, Leanne Read and other people with Galactosaemia who are treated at the Charles Dent Metabolic Unit.

Galactosaemia is a rare inherited metabolic disorder. In the UK around one in every 40,000 to 60,000 people will have Galactosaemia.

In people with Galactosaemia a particular enzyme (GALT) does not work as it should. This affects the body's ability to process and produce energy from a sugar called galactose. Galactose comes from a sugar called lactose, which is found in milks.

When people with Galactosaemia ingest foods or liquids containing galactose, undigested sugars build up in the blood. This can have a toxic effect on the brain. Some galactose is produced by the body. Therefore, it is not possible to completely remove galactose from circulation.

There is no cure for Galactosaemia; it is a lifelong condition. It is treated by following a strict diet that avoids all sources of galactose. More information about the diet is available from the Galactosaemia Support Group on their website.

Each person with Galactosaemia experiences different symptoms and people with Galactosaemia may be at risk of a range of complications, for example affecting their eyes, bone health or fertility. They therefore require specialist follow up and monitoring at a Metabolic Centre, and will need to attend regular appointments there.

“I really want to drive home the point that there is such a range of symptoms. Learning difficulties, tremors, social difficulties. Sometimes they can be subtle but it’s not a one size fits all. We’re very different and it’s not like you can prescribe a few symptoms that fits everybody. It affects people to different extents.” ~ young person with Galactosaemia

Strengths

Many people with Galactosaemia are very detail oriented and conscientious workers. Often they might prefer to understand the rationale behind tasks and can be meticulous in their work. Many people with Galactosaemia have a quiet, introverted temperament and are not prone to big displays of emotion.

“I would like my employer to understand that I am good at using computers and IT, but Maths and English are my shortcomings. I need extra time for tasks involving a pen and paper.” ~ young person with Galactosaemia

Difficulties

Learning and thinking skills

People with Galactosaemia have a wide range of thinking and learning abilities. Some people with Galactosaemia have an intellectual disability or learning disability, meaning that their difficulties with thinking and learning have a very significant impact on their ability to live independently. Other people with Galactosaemia have excellent learning and attention skills. Many have some degree of difficulties.

Attention, concentration, and speed of understanding new information may be particular areas of weakness. Weaknesses in these areas can impact on the young person’s ability to take in and learn new information or skills.

“If I’m in class and there’s a lot of noise I can’t concentrate; I switch off.”

“The training needs to be longer and be thorough. They need to explain everything… especially if I don’t understand something… if you show it to me on a board step by step then I can really remember it.”

“I need things to be explained to me quite thoroughly… I feel like I need to be shown how to do it.” ~ young people with Galactosaemia

English and Maths can be particularly difficult subject areas for people with Galactosaemia. Some people with Galactosemia may have specific learning difficulties such as:

  • Dyscalculia This is a specific and persistent difficulty with numeracy, mental arithmetic calculations or mathematics. It can result in trouble with timetables and deadlines, memorising numbers (including telephone numbers or prices), recognising digits and mathematical symbols (e.g. +, x), and solving mathematical problems. In everyday life these may translate to problems with budgeting (e.g. working out exact change, estimating total cost), measuring things, and reading graphs or charts.
  • Dyslexia is a specific difficulty with reading, writing and/or spelling. It can lead someone to read and write more slowly, to struggle with written information, and learning the names and sounds of letters.  
  • Verbal dyspraxia is also quite common. This is a difficulty in making and co-ordinating the precise movements required to produce clear speech.

Communication

People with Galactosemia may have difficulties with expressing their thoughts and with finding the right word. To manage these, you might notice increased use of pauses in speech, fewer content words (e.g. verbs and nouns) and more pronouns (“this”, “that”, “her”), or more descriptive words (e.g. “bird that eats fish” instead of “pelican”).

“I can’t write it down because they’re speaking too fast then it’s hard to write” ~ young person with Galactosaemia

Emotional health and social relationships

People with Galactosaemia are more likely to experience difficulties with anxiety and low mood than people without Galactosaemia. Many people with Galactosaemia feel that they are different because of their condition and feel that they are not well understood.

Researchers and healthcare professionals working with people with Galactosaemia have noted that they are more likely to be shy, and may find building relationships with new people challenging. People with Galactosaemia might benefit from extra support in improving their confidence and ensuring they feel able to fully participate at school, college or work.

Some people with Galactosaemia have difficulties with social and communication skills which mean they are given a diagnosis of Autism Spectrum Disorder (ASD). For more information about ASD, see the National Autistic Society website.

“It can be quite a lonely feeling... It made me feel different for various reasons – missing school to go to hospital, socially it can be difficult. I used to get very down about Galactosaemia. Growing up with it was hard.”

“I wouldn’t ask when I wanted help because I was always shy.” ~ young people with Galactosaemia

A number of health and social care specialists may be involved in supporting someone with Galactosaemia. It may be helpful to discuss the support available with a Metabolic Centre or GP. Consider referrals to the following:

  • Educational Psychologist or Neuropsychologist to complete a detailed assessment of cognitive strengths and difficulties, which can inform the best ways to support learning or work performance.
  • Occupational Therapist who helps with everyday activities, including tasks around the house, social activities, and participating at school or work.
  • Local mental health services for example Child and Adolescent Mental Health Services (CAMHS), primary care psychology services (IAPT) or Community Mental Health Teams (CMHTs).

General Strategies

Some strategies that are often helpful are listed below here, however there are many others. Sources of further information can be found below.

Each young person with Galactosaemia is different – collaborate with them to work out which of these strategies will be helpful.

Understand the importance of the diet People with Galactosaemia have to follow a special diet to manage their galactose levels. This means school meals and canteen food can be tricky. Knowing what is in food or being able to bring packed lunches is essential for their wellbeing.

“Once I was telling two people about it and they were like ‘Oh, that’s like lactose intolerance’, and they wouldn’t accept my explanation or understand its complexity.”

“I went to a school that did not allow packed lunches. My teacher told me: ‘OK, go in every day and ask what’s in the food’. I could only do that once because it is inconvenient and I felt nervous.” ~ young people with Galactosaemia

Accommodate their needs Managing Galactosaemia means going to regular appointments at a specialist metabolic centre, which may be located at a hospital some distance from home. These may require time off from school or work.

“I have hospital appointments, that I will need to attend and these are often far away, so I may need to take time off work” ~ young person with Galactosaemia

Allow extra time People with Galactosaemia may need more time to express themselves and to complete tasks that are particularly difficult or complicated. In these situations it is best to adopt a non-rushed approach.

Show patience and understanding A supportive environment can go a long way to get the best out of someone. Try to show the young person that you want to understand and support them.

Ask questions If you are unsure about a person’s needs then ask them or their family for more information. They may be able to share records from their specialists or other healthcare providers.

Strategies to support learning and memory

Explain things thoroughly Break down the steps involved in a task to make it easier for the young person to take them in. Explain each step and show the person how to do it slowly, then check that they understand how to complete it.

Be creative Teachers and trainers should use different modalities to promote concentration, learning and memory. Using visual aids, flashcards, practical demonstrations or drawing can be very helpful. 

Minimise distractions When providing important information, make sure that you are in a quiet place with few distractions. This can help with attention and concentration.

Keep it simple Break down information into small chunks and use simple and concrete language to make it easier to understand.

Repeat important information If necessary, repeat information and provide a summary of what has been discussed. Consider making requests in writing (e.g. by text or email) to reduce demands on concentration and memory.

Provide handouts Write down important information and give this to the young person so that they have something to refer back to.

Consider assistive technology Speech recognition software can also be useful to translate what a person is saying into written text. These are easily available for use with most word processing software. They can be useful for those who have difficulties with reading or writing information.

Memory aids External aids such as calendars, visual schedules, smartphone reminders or apps can be extremely helpful, both for people with and without Galactosaemia.

Strategies for communication

Encourage questions A person with Galactosaemia may be shy and reserved, which can make asking questions difficult.

Be encouraging If the person is struggling to find a word encourage them to describe the word or think of another word that means the same thing (e.g. upset instead of sad).

Be open to different communication approaches Consider including a range of strategies to enhance communication – write information down, use gestures, point to related objects. This can be particularly helpful when working with younger children or teenagers.

Slow your pace It may be helpful to deliver information more slowly so that the person with Galactosaemia has more time to take in what is being said.

Check understanding Ask to make sure that the young person has understood the message correctly.

Improving confidence

Be aware Some tasks, like giving presentations or reading out loud in front of an audience, can be very anxiety provoking and may be particularly challenging for someone with Galactosaemia. Not being sufficiently supported or prepared for this can hinder performance and affect confidence.

Give positive feedback Highlight the person’s strengths and offer positive feedback whenever something has been done well.

Be realistic When setting educational or employment goals make sure that they are achievable for the young person. It is essential to have a good understanding of their unique strengths and difficulties.

Be inclusive People with Galactosaemia sometimes struggle to feel confident or to build relationships. For some, this means that they are less likely to be involved in clubs and other activities at school or work. Be mindful of this and offer support to help them take part in social events. Consider planning a range of activities to include ones that feel more comfortable for the person with Galactosaemia

  • The Galactosaemia Support Group brings together families affected by Galactosaemia and offers support and information www.galactosaemia.org
  • Metabolic Support UK is the umbrella organisation for people affected by inherited metabolic disorders in the UK www.metabolicsupportuk.org

Resources for teachers

Resources for students

  • The Study Skills Handbook Book by Dr Stella Cottrell
  • Buzan’s study skills: Mind maps, memory techniques, speed reading and more! Book by Tony Buzan
  • Sail through exams! Preparing for traditional exams, for undergraduates and taught postgraduates Book by Peter Levin
  • Anxiety Canada: Anxiety in Youth Resources about managing anxiety for young people www.anxietycanada.com
  • Choose Love Social and emotional learning programme www.legacy.chooselovemovement.org/schools
  • A guide to assistive technology options is available at www.dyslexic.com

Resources for the workplace

Direct line: 0203 448 4778
Switchboard: 0203 456 7890
Fax: 0207 209 2146
Email: uclh.metabolic.enquiries@nhs.net

The Charles Dent Metabolic Unit is located at the National Hospital for Neurology and Neurosurgery in Queen Square

Services

Printing of this document is only valid on the day printed, please refer to the website for most up to date information:

https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/supporting-someone-galactosaemia

Service information

Page last updated: 04 June 2024

Review due: 30 June 2025