Week aims to raise awareness of disease

SAY the word scleroderma and what comes to mind?For most people, even some in the medical industry, it is completely new.March is Scleroderma Awareness Month, which hopes to change the lack of knowledge about the life-threatening disease.Actor Jason Alexander, best known as George Costanza in Seinfield, has a sister with the disease and is a passionate advocate for scleroderma awareness.Scleroderma is a chronic connective tissue disease that primarily affects the lungs, gastro-intestinal system, kidneys and the heart.Although not fully understood, an over production of collagen basically impairs the function of these organs.Treatment at this stage is only remedial.An information session was held yesterday at BUFS Pharmacy for scleroderma sufferers.Natropath and pharmacist Marc de Vecchi provided facts and advice about the many medications that sufferers are prescribed.One woman takes 21 pills a day to manage her various ailments.‘‘In a lot of cases the medications are keeping these people alive,’’ Mr de Vecchi said.‘‘We need to keep an eye out for side-effects and changes where the drugs are not interacting properly.’’Spokeswoman for the Bendigo support group and scleroderma sufferer Judy Browning said information on the drugs was really helpful.‘‘You just sort of get it from the doctor and toddle off and don’t really know how it works,’’ she said.‘‘Initially it’s pretty scary and there’s not a lot of information out there.‘‘That’s where the support groups come in handy.To see someone who’s been through it and come out the other side is reassuring.’’