Section 4 - Living with Kallmann's SyndromeNext Question

26.How could Kallmann's syndrome affect my lifestyle ?

As you may have already experienced, there are several ways in which Kallmann's syndrome could affect your lifestyle. Perhaps you can relate to the following points.

Looking younger than your age...

This can be a major psychological challenge for untreated Kallmann's syndrome sufferers. Many become depressed, withdrawn and lacking in confidence because they feel that they look much younger than their actual age. They become ashamed of how young they look and fear not being taken seriously when asked how old they are. For example, it can be both humiliating and embarrassing when you are refused drinks at the pub or entry to nightclubs because "you look too young" even though you may be well over 18.

Not all is bad though. Hormone replacement therapy will correct your lack of pubertal development, but the chances are that although you will age, you will probably always look a little younger than your age. This has its advantages though. After all, will looking about 40 years old when you are actually 50 really be so bad ?

Unpleasant smells or smells which warn of danger...

You already know that there is no cure for anosmia, so what do you do to cope with your inability to smell ?

If you have a gas appliance in your home, you should be aware that you will not be able to smell a gas leak. Although very rare, this is potentially extremely dangerous because it could either result in an explosion or in unconsciouness, asphyxiation or even death due to the fumes. The answer is to buy a gas alarm, a device similar to the smoke and carbon monoxide alarms. You can buy battery or mains-powered gas alarms in many hardware shops. In the unlikely event of there being a gas leak, a very loud and high-pitched noise will sound and the necessary precautionary action can then be taken.

Life span...

Kallmann's syndrome is not a life-threatening disease and one can have a normal lifespan even without treatment. However, treatment greatly improves the quality of life and also helps to reduce the risk of osteoporosis.

Taking my medicines abroad with me on holiday......

As long as you go prepared, there should not be a problem if you want to take your injections or pills with you on holiday.

Before you go abroad, make sure that you have a letter from your doctor explaining the nature of your treatment and giving the names and quantities of the medicines you need to take with you. Take a reasonable supply of needles, syringes, pre-injection swabs and plasters. Put it all in a "medicine bag" and take it as part of your hand luggage. It is not a good idea to put it in your main luggage in case your luggage goes missing. If you wear a pump around the waist for GnRH pulsatile therapy, you will probably need to take it off before you walk through the metal detector at airports.

Although you are able to get most of the medicines you need in the UK and on the NHS, remember that if you run out whilst overseas, it will almost certainly be very difficult to obtain the same medicines locally.

Once you are at your final destination, the next thing you have to worry about is who should give you the injections. If you self-inject, this will not be a problem but if you usually visit your GP back home for your injections, you will need to find a local hospital or doctor who would be able to help you.

If you travel to another EEC country, you can get medical advice and treatment free of charge if you present the certificate E111. You can obtain an application form from your local GP or post office and you will usually receive a certificate immediately. If you do not take an E111 certificate with you, you will almost certainly have to pay for treatment. Unfortunately, the vast majority of travel insurance policies do not cover pre-existing medical conditions, such as Kallmann's syndrome, and you will still have to pay for any treatment received abroad which is directly related to the disease.