Living with Kaposis’s sarcoma

Many people with slow-growing or early KS often find that physically they feel quite well, but emotionally they may be finding it difficult to cope. For some people the appearance of KS is the first sign that they have AIDS – coming to terms with this diagnosis, whether they knew about it beforehand or not, together with the constant physical reminder of their illness can be devastating. It often helps to talk to someone who understands the special needs and problems of people with AIDS and their partners and families. Over the last few years a large number of organisations have been set up to offer help and support to people with AIDS. At the back of the booklet we have listed some of the main AIDS organisations in the UK. Local support groups can also provide support and you can get details of these from The Terrence Higgins Trust.

People affected by Kaposis’s sarcoma in the skin may find this distressing. However, there is a way to reduce the differences in skin colour and make the lesions less noticeable. Camouflage make-up consists of specially designed creams, and the ranges available are suitable for all skin types and colours, in both men and women. Some clinical nurse specialists, the British Association of skin camouflage and the British Red Cross Society offer a camouflage make-up service with individual teaching sessions on how to apply it for the best effect .

If KS has caused swelling of the limbs and lymph nodes (lymphoedema), you may have hot, overstretched and painful skin in those areas. CancerBACUP has a section on lymphoedema, and CancerBACUP’s Cancer Support Service can give you details of your nearest lymphoedema clinics.

If you are finding it difficult to eat and are losing weight, it may be advisable to take small, frequent, high-calorie, high-protein meals which are available from chemists and hospital dieticians in liquid form. CancerBACUP has a section called diet and the cancer patient which you may find useful. If cleaning your teeth is painful because of mouth lesions, try using a soft toothbrush or foam stick.