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Travis

I am Travis - my wife has had Scleroderma since 1994. Numerous things go through your mind when you discover that your loved one has a chronic disease that may kill her at any time. In my case, this included thoughts about the need to adjust my priorities and expectations. Was my job too important? Do I need to spend more time and energy with the spouse? Do I need to readjust my plans for the future? How do I deal with the effects of the disease? I discovered that there is a need for the caregiver to recognize that there are limitations to what the Scleroderma patient can do. There are household chores and activities that I may need to take a more active role in doing. I tease my wife that I help with the cooking to keep her away from sharp instruments (that might damage her hands). There may also be a need to slow down the pace of shared activities to make allowances for natural fatigue and other effects of the disease. That might mean that some activities may need to be done separately. For example, on vacation trips it is OK for my wife to settle in with a good book and enjoy the scenery while I may be off tramping the trails. It is important to also take care of yourself, if you can't enjoy life, then how can she? On the other hand, be realistic. Understand the realities of the disease, make the necessary plans and adjustments that may be needed. Life doesn't come to an end for the caregiver; make the most of what you are given.

 

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Newsflash

Researchers at Princeton University used DNA microarrays to characterize gene expression patterns in skin biopsies from individuals with a diagnosis of systemic sclerosis with diffuse scleroderma.