Increasing Scleroderma Support and Awareness

Most people seem to know what scleroderma is only because of the attention it gained when actor/comedian Bob Saget's sister died from it in 1993. Bob went on to direct a television movie in her memory called For Hope. Because it is rare, unique and obscure, scleroderma patients tend to find themselves feeling somewhat isolated. 

The most helpful thing family and friends can do is to become educated on the subject. After all, it is difficult to provide support for something which you do not understand. It is common and natural to avoid it and choose not to talk about it. This approach will not make the problem disappear, and it will not help anyone involved. Do not assume the patient does not want to talk about it just because they do not bring it up. This is a common mistake people make.

Providing support might involve anything from simply a kind word to getting involved in support groups and activities that promote awareness. Sometimes scleroderma patients feel helpless and unsure how to cope. Lending a hand may be just what they need to build up their strength and momentum. Do not be hesitant or afraid to get involved and ask questions. Show that you care by asking how you can help. A gentle voice and a kind word can speak volumes.