DEBINT4.GIF (10584 bytes)

An A to Z of Topics Related to Nutrition and EB

A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W  | X | Y | Z 

G is for growth

G is for growth. Growth rate is one of the most important measurements when it comes to evaluating the nutritional adequacy of an EB child or adolescent's diet.

Of course, sometimes "small is beautiful", but only if it results from having inherited genes for small stature from our ancestors along with eye colour, etc. Abnormally small stature is a serious sign of inadequate nutrition which, in turn has "knock-on" effects on wound healing, ability to fight infections, general quality of life and long-term survival. It mustn't be ignored as "just part of having EB". Those with the more severe types of EB, often struggle to consume enough nutrition to satisfy the dual demands of healing and growth and need dietetic help to achieve both of these goals. Adolescence is a particularly critical period because the body needs huge amounts of nutrients to fuel the demands of the teenage growth spurt. So, if you are the parent of a child or teenager with a severe type of EB, I urge you to have their growth monitored and their diet supplemented if necessary. In this particular context "Size is everything"!


H and I are for haemoglobin and iron

H and I are for haemoglobin and iron respectively. Because haemoglobin and iron work so closely in the body, it is easier to discuss them both together. Haemoglobin is the red pigment found in blood which transports oxygen from the lungs to the body tissues. Iron is a mineral which is essential for the body's bone marrow to produce haemoglobin for new red blood cells. If there is not enough iron in the body, (usually because there are large losses e.g. from unhealed wounds or because intake is insufficient) the blood cells produced are fewer and smaller than normal. Iron is also essential for many other complex metabolic processes.

Half of the iron contained in the adult human body is present as haemoglobin; the rest is found in the body's muscles and liver. Iron is present in many foods, the best sources being those of animal origin such as meat including liver. Cows' milk is a poor source of iron, but babymilk formulas and special drinks such as Complan Ensure, Enrich etc are fortified with iron as well as many other nutrients. Some brands of bread and breakfast cereal are fortified with iron. While certain nutrients can aid iron absorption, for example ascorbic acid,  - perhaps the reason why Popeye did so well on spinach, others, such as the tannins in tea inhibit iron absorption. Many of those with EB are unable to consume adequate amounts of iron from the usual dietary sources, and they require an additional source such as concentrated liquid medicinal iron taken by mouth or gastrostomy, or sometimes an intravenous preparation.

At the very least iron deficiency anaemia makes us feel tired, listless, irritable and less able to concentrate. In children, it can adversely affect mental development and learning. More importantly, for those with persistent skin damage, infections and inflammation, chronic anaemia jeopardises the healing process. Therefore, it is vital to monitor iron status regularly, so that if anaemia is present, steps can be taken to correct it before it becomes profound. As well as the haemoglobin level, it is important to check other levels such as those which measure the body's stored iron. Simplistically put, this is a bit like knowing not only how much petrol there is in your car's main tank, but also how much is in your reserve tank.

For more information about iron and haemoglobin, please refer back to Jackie Hitchen's very comprehensive article about iron deficiency anaemia . I would like to endorse her advice about the importance of complying with the prescribed iron supplement. Of course, in the event of undesirable side-effects, ask for advice as there is invariably a way round the problem.


J is for Junk Foods

J is for Junk Foods. Everyone knows what they are - fizzy drinks, chocolate, sweets, crisps, cakes, biscuits - indeed anything with a high salt or sugar and/or fat content and little else.

Because of their low nutritional value, dietitians and nutritionists often call such foods "empty calories," but we enjoy them as much as the next person! Deep down in our psyche, these foods tempt us precisely because they are such rich sources of calories. Eons ago, our survival depended on our stoking up on concentrated calories sources such as honey and animal fat while the going was good, in case famine was round the corner. The attraction continues and food manufacturers exploit this. So, are junk foods so very bad? The answer is, it depends on how much of them you eat and what else you eat. If they are regularly eaten to the exclusion of more nutritious foods, then the diet will be unbalanced unhealthy in the long term. For sufferers of severe EB, who consume a fairly balanced intake from prescribed supplements, those extra calories (empty or otherwise) can be valuable because they allow other dietary components such as proteins to be used efficiently. A note of caution though, sweet sticky foods and drinks encourage tooth decay unless you are diligent about oral hygiene. Try to have them at the end of a meal and if the teeth can't be cleaned afterwards, rinse the mouth with water and use a recommended mouthwash.


K is for Vitamin K

K is for Vitamin K, named after the Danish word Koagulation (in English, coagulation or clotting). Vitamin K was discovered in 1939, by Danish scientists who found that it was an important factor in the normal blood clotting of chickens. The best cure for the failure of their blood to clot was decaying fish meal!

Humans also are dependent on a decaying process for Vitamin K. Gut bacteria work on the contents of our intestine to provide us with about half of our needs. The rest comes from fresh green leafy vegetables such as broccoli, spinach, lettuce and cabbage. Vitamin K deficiency can occur in people who receive lengthy or frequent courses of anti-biotics. This is because, in addition to treating the original infection for which they were prescribed, anti-biotics also unfortunately reduce the number of friendly bacteria in our intestine. Although the human body stores some Vitamin K in its liver, without a regular food source of Vitamin K, those people heavily reliant on anti-biotics are vulnerable to deficiency. Supplementary Vitamin K is found in certain multivitamin preparations and liquid nutritional supplements.


L is for Lipids

L is for Lipids, the chemical term for fats and other compounds that do not dissolve in water.

The proportions of different lipids in our blood are dependent partially on our diet and partially on our metabolism. There is increasing evidence that selecting a diet similar to that of Mediterranean countries may mean lower rates of heart disease and cancer. Amongst other changes, this involves eating less meat, more fish - especially oily types such as mackerel, salmon, sardines, pilchards and tuna, and choosing oils and margarines with a high ratio of polyunsaturated to saturated fat (check food labels for this information). Examples of these are sunflower, soya, rapeseed and olive oils and margarines. Fat has the highest calorie content of all our foods, more than twice that of protein or carbohydrate and eating too much fat will lead to weight gain if intake exceeds needs. However, some dietary fat is essential for health and to make foods more palatable. Fat shouldn't necessarily be regarded as "a bad food" (see Junk Foods above). Indeed, for those who struggle to gain or maintain their weight, the high calorie, low bulk, bland tasting nature of fats is invaluable. For example, cream can be added to drinks, soups, mashed potato and any liquidised food. Olive oil and margarine can be put into most savoury dishes. Cream cheese, smooth peanut butter and creamed coconut can be added to soups and sauces.


A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W  | X | Y | Z

 


About DebRA | About EB | Management of EB | Research | News & Events | Resources | Chat

DebRA House  13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire RG45 6LS
Telephone: +44 (0) 1344 771961  Fax: +44 (0) 1344 762661
DebRA is a registered charity
Registered Charity No: 1084958
© DebRA international all rights reserved 2002