Dear Dr. Roach: I am a 76-year-old woman in good health, although I am overweight. I was recently diagnosed with CREST syndrome. I’m finding it difficult to learn more about this autoimmune disease. Very little seems to be known.
I am particularly interested in learning how this will affect my lifestyle. I am currently in a weight-loss program, practice Tai chi once to twice a week, and attend two weekly water exercise classes designed for mobility and balance. Can you provide me with any information that I can use to research about how to handle this disease?
R.C.V.
Systemic sclerosis is an autoimmune disease that can affect multiple organs, far more than just the skin, which is what its former name, scleroderma, described. Most people with CREST syndrome have a form of systemic sclerosis called “limited cutaneous systemic sclerosis.” CREST is made up of five separate issues:
- Calcinosis cutis, the deposition of calcium in the skin.
- Raynaud’s phenomenon, colour changes and pain in the extremities upon exposure to coldness.
- Esophageal dysmotility, a swallowing disorder, which might have symptoms including heartburn, pain on swallowing, or gagging/regurgitation.
- Sclerodactyly, the hardening of the skin, especially in the fingers, giving the hands a puffy appearance. The skin factor in people with CREST usually does not affect the body or the extremities closer to the body besides the elbows and knees.
- Telangiectasias, dilated blood vessels in the skin that are sometimes called “spider veins.”
Unfortunately, even the so-called “limited” form of systemic sclerosis can still involve other organs, including the heart and especially the lungs. A rheumatologist is the expert on diagnosis and treatment of the scleroderma group of diseases, although other experts can sometimes provide consultation.
Treatment depends on the organs involved and the symptoms the person has. Although you don’t note any symptoms of CREST, you might benefit from treatment of Raynaud’s (and I’d caution you about even cool water exercise, which can trigger the symptoms of Raynaud’s). However, if you had severe disease — such as heart or lung disease, or progressive and severe skin disease — your rheumatologist might recommend medications to decrease the activity of your immune system. This should be done as soon as possible once severe disease is noted, so periodic screening of the possibly affected organs is essential.
The National Scleroderma Foundation has much more information, including information about support groups, at scleroderma.org.
Dear Dr. Roach: In a recent column, you warned that sleeping with earbuds in might harm a person’s ears. Can you explain how that injury would come about? I have found that listening to sleep stories or guided sleep meditations when sleep eludes me makes it possible to avoid taking medications. I thought that was a good thing, but now I don’t know.
A.P.
I was concerned that if a person sleeps on their side, the earbud could put too much pressure on the ear canal and cause damage to the skin. Although I found at least one case report of this, it does not seem to be likely. Also, if you are listening at a high volume, prolonged exposure can cause hearing loss. Finally, noise-cancelling earbuds can make it harder to hear if an emergency is happening. All of these risks are probably small, though.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected]
