Sharon Joffe was a stunning woman – so very beautiful in mind, body and spirit. We grew up in the same city, Johannesburg South Africa, and used to ‘double’ date. Her husband Stan, was her boyfriend from high school days, and together they made a stunning couple – she with her dark thick hair and flashing eyes, gloriously fit and sexy, full of life and laughs. and Stan, dashingly good looking, tall and tanned. Sharon always had a wicked joke or two to tell which was sometimes silly, or naughty, and my, how she told it so very well. She would have us in hysterics as she told tales of funny things that happened to her. Her home was always welcoming as she moved across the world to live in the USA, welcoming to friends, family and everyone who didn’t have somewhere to go. She was a brilliant woman – teaching at UCLA, enjoying the campus life and remembering our early years at university in Johannesburg at The University of The Witwatersrand. There was tennis, skiing, dancing, parties, cooking, dinners both elaborate and casual – and so much traveling around the world – Italy being a favorite.
And then the dreaded disease of scleroderma hit her – just when her young daughter Lauren, was graduating, with a future in fashion ahead of her. But such was the love that her children and family had for her that everyone rallied around. And Lauren decided to stay close, not leave and go to New York to find her dream, but rather to be with her mother and help her through the nightmare that would take up the next twenty years of all of their lives. Ilan, her son, and Stan, her father and stepmother, brother and sister in law, all members of her family and friends – came closer showing their love, and helping – but nothing and no one could stop the progression of her pain and suffering.
Sharon – you were so brave, so determined, so strong – and such a true and wonderful friend – I shall never forget you.
So today my donations and my dedication is for Sharon Joffe and the scleroderma Foundation.http://www.scleroderma.org/
What is scleroderma?
Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.
There are an estimated 300,000 people in the United States who have scleroderma, about one third of whom have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult and there may be many misdiagnosed or undiagnosed cases as well.
Localized scleroderma is more common in children, whereas systemic scleroderma is more common in adults. Overall female patients outnumber male patients about four to one, and the average age at diagnosis is in the forties.
Factors other than sex, such as race and ethnic background, may influence the risk of getting scleroderma, the age of onset, and the pattern or severity of internal organ involvement. The reasons for this are not clear. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases.
However, scleroderma can develop and is found in every age group from infants to the elderly, but its onset is most frequent between the ages of 25 to 55. When doctors say “usually” or “for the most part,” the reader should understand that variations frequently occur. Many patients get alarmed when they read medical information that seems to contradict their own experiences, and conclude that what has happened to them is not supposed to happen. There are many exceptions to the rules in scleroderma, perhaps more so than in other diseases. Each case is different, and information should be discussed with your own doctor.
The exact cause or causes of scleroderma are still unknown, but scientists and medical investigators in a wide variety of fields are working hard to make those determinations. It is known that scleroderma involves overproduction of collagen.
Most patients do not have any relatives with scleroderma and their children do not get scleroderma. Research indicates that there is a susceptibility gene which raises the likelihood of getting scleroderma, but by itself does not cause the disease.
At the present time, there is no cure for scleroderma, but there are many treatments available. Some are directed at particular symptoms like heartburn, which can be controlled by medications called proton pump inhibitors or medicine to improve the motion of the bowel. Some treatments are directed at decreasing the activity of the immune system. Some people with mild disease may not need medication at all and occasionally people can go off treatment when their scleroderma is no longer active. Because there is so much variation from one person to another there is great variation in the treatments prescribed.
It is a painful, slow, progressive and devastating disease. Those who have it show huge courage as did my dear friend Sharon. Her pain and suffering has ended – and she will stay in my heart as she was in her best years – gorgeous, full of life and humor and always giving.