Can you imagine your baby with an illness no one else has? That’s only the beginning if your child has Galactosaemia

Stuart Ford is a co-ordinator for the Galactosaemia Support Group, which brings parents and children affected by this rare illness. All foods that contain lactose must be avoided for life. Here he explains the experience of a child suffering Galactosaemia.

Raising awareness of Galactosaemia

Galactose is a sugar which mainly comes from lactose, the sugar found in milk. Lactose is normally broken down into the two simple sugars, galactose and glucose. The galactose is then broken down further and used in many parts of the body including the brain. In galactosaemia it cannot be broken down completely and used because of an absence of an enzyme. Galactose then builds up and leads to the serious illness that occurs in the first few weeks of life once the baby is fed on milk. It is a lifelong condition. Galactosaemia is rare. In the UK, about 1 child in 45,000 is born with this condition so between 12 and 18 children are born each year with it.

Signs of liver disease including jaundice, lethargy, poor feeding and weight loss are very common in new borns. The severity of the liver disease varies a lot. Babies can also be prone to infection at this stage, although this does not continue to be a problem. Cataracts may also be present. Once the galactose free diet has been started the liver disease will disappear and the baby will start to gain weight normally. Over time the cataracts will also disappear.

Unfortunately some children develop speech and language and/or learning difficulties, especially in maths and science. There is no way of preventing this at present. The speech and language difficulties consist mainly of problems with organising speech (oromotor dyspraxia). There may also be a problem with movements which is called motor dyspraxia. This leads to slowness in completing tasks.

In addition to these neurological problems, galactosaemia can affect the ovaries. Many girls do not go into puberty at the right time. This is because their ovaries do not produce enough of the hormone oestrogen. None of these problems are life threatening and galactosaemic children are otherwise as healthy as any other child provided they continue on their galactose free diet throughout life. In the future we hope that research will lead to better ways of preventing some or all of the long-term problems in galactosaemia.

The Galactosaemia Support Group brings families with galactosaemic children and adult galactosaemics into contact with each other and offers support where most needed. Through the group the families are able to share experiences, help each other with problems and exchange information and ideas. http://www.galactosaemia.org

The GSG are always on the look out for dairy free alternatives. Interestingly, they recently paid for a cheese analysis and found that cheese such as Emmantal, Jarlsberg and a couple of extra mature cheeses, such as Grano Pradano, are acceptable in a Galactosaemic diet, because the lactose is leached out of cheese as it matures. However, there are still other issues with lactose intolerance here. Check http://www.galactosaemia.org/index.php/eng/Food-diet/Cheese as it is quite a complex as to what can or can’t be eaten.

Shoppers looking for lactose-free food on GoodnessDirect can look at the Lactose-Free section or eliminate products with lactose by clicking on My Options. But be careful, products can have very little lactose present, but may still have galactose and glucose in them which makes them unsuitable in galactosaemia. The GSG provide great advice on what can and cannot be consumed.