Living with GH

NeedleHow effective is treatment?

Venesection treatment will cause tissue iron to be mobilised and iron stores will return to normal. However, it will not cure some serious clinical conditions such as diabetes or cirrhosis if they are already present at the time treatment is started. This emphasises the need for early diagnosis.

Fatigue, lethargy and abdominal pain should decrease.

Cardiomyopathy should improve providing cardiac damage is not severe. In severe cases iron chelation treatment can reverse congestive heart failure, this will need to be discussed with your cardiologist.

Bronzing of the skin should fade.

Early liver problems such as fatty liver disease or mild fibrosis are generally recoverable. Cirrhosis however is not reversible. Cirrhosis is the pre-cancer stage of liver damage as a result of GH and usually only those that have not been diagnosed until very late are at high risk of cirrhosis.

Diabetes will require ongoing management.

Sexual dysfunction and arthritis do not usually improve. Indeed arthritis may appear later even if absent at the time of diagnosis and treatment.

Providing there is not massive long-standing iron overload or damage present at the time treatment is started; those who undergo treatment have a normal life expectancy.

Diet and alcohol
It is not possible to treat GH with a low iron diet. The iron absorbed weekly from a normal diet is around 60mg, and if you attempt to keep your iron intake very low by restricting your diet you may well not get adequate nutrition.

The iron absorbed from a portion of spinach or red wine for example is about 1mg and red meat would only contribute 2 or 3mg.  To put this into context, a single venesection will remove about 250mg.

However THS makes the following recommendations, with the usual caveat that the society is not a replacement for individual qualified medical advice.

      • GH patients should avoid vitamin supplements or tonics containing iron, and breakfast cereals heavily fortified with iron
      • Large doses of vitamin C should also be avoided, as it makes the process of depositing iron in some organs easier and enhances the absorption of iron from the diet. Vitamin C should be taken outside of meal times for the same reason.
      • Patients should limit the intake of offal (liver, kidney etc.) and red meat. The rate of iron absorption from red meat is 20% to 30% whereas vegetables and grains have less iron and a 1% to 20% rate of absorption
      • Minimise alcohol intake, particularly with meals, as it may increase iron absorption and it can also cause liver disease. Anyone who has cirrhosis should avoid all alcohol
      • Tea and milk products taken with a meal reduce the amount of iron absorbed
      • Raw oysters and clams may contain an organism named Vibrio Vulnificus. Iron is an important growth factor for Vibrio Vulnificus which multiplies rapidly in individuals with iron overload. Vibrio Vulnificus infection can be fatal
      • People with GH may be more prone to illness from raw shellfish that has been left in warm conditions

Exercise

Along with maintaining a healthy balanced diet, people with GH should endeavour to remain active and undertake regular exercise. Though this can be difficult with some of the symptoms you might be dealing with, it remains very important. Consult your doctor about an exercise programme suitable to your individual needs, weight and symptoms.

Smoking

Smoking is always ill-advised of course, however given that GH is linked to a wide range of symptoms including heart problems it is particularly unwise. For advice on stopping smoking visit the NHS Smokefree website at http://www.nhs.uk/smokefree.

Insurance

Obtaining holiday, travel or other personal insurance has caused problems for a number of people with GH and other genetic disorders. Age is also a significant factor.

There is no single insurance solution that will suit everyone; individual medical circumstances are very varied. Those who have been treated, have no symptoms and understandably feel there is negligible risk of GH causing any medical problem on a holiday want to avoid unreasonable extra charges, while those who have suffered organ damage need an insurer who has an understanding of their condition and will offer appropriate cover. Different insurers and brokers offer different policies, some of which will be better for one traveller but not suitable for another.

We are not insurance experts and cannot offer specific advice. Individuals must make their own decisions after taking whatever professional advice they may need. You can find general advice on travel insurance at MoneySavingExpert.com. Be sure to declare any pre-existing conditions when arranging insurance otherwise your insurer may not be obliged to pay any claim, even for an incident unrelated to the condition.

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