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 (
1-
3). Hardening of
the skin is one of the most visible manifestations of the disease. Internal organs are also
frequently affected with the systemic form.
People with scleroderma often have specific facial changes. The nose appears pinched and
thinned and the opening of the mouth might be decreased in size (“microstomia” or “small
mouth”). Often, the skin over the upper lip can become lined. The development of dilated
small blood vessels, called telangiectasia, affects the face and other parts of the body.
The appearance of the eyes can also alter, all of which can negatively impact the patient’s
appearance (
4). The general tightening of the
skin over the face makes lip and mouth movements, as well as oral hygiene, difficult.
Microstomia may make it difficult to open the mouth wide enough for dental procedures or
even oral hygiene. Therefore, preventative dental care through regular flossing and
brushing of the teeth and gums after each meal is of utmost importance (
5). The best approach to management is by means
of facial grimacing and mouth stretching exercises, performed daily. Regular dental visits
are also important to help prevent dental caries. The dentist can also recommend a
personalized program of good oral hygiene. Floss holders, pump toothpaste tubes, and
built-up handles on toothbrushes can help people with hand impairment, while an electric
toothbrush is strongly advised (
6).
From the psychological aspect, a common reaction to being told that one has a disease such
as scleroderma is, “why me?” It is not clear why only several people develop the disease
and others do not. One does not bring scleroderma upon him or herself, and therefore,
should not feel guilty or responsible for the illness. A person newly diagnosed with
scleroderma may feel alone and uncertain about where to turn for help (
7). Psychopatologically speaking, the majority of
the sclerodermatic patients may manifest mild anxiety due to apprehension and vigilance
related to the perceived threat from the illness and the uncertainties over etiology,
prognosis and outcome. Others may show depression, generally of moderate severity. He, or
she, may experience a number of other feelings and emotional reactions from time to time,
including initial shock or disbelief, fear, anger, denial, self-blame, guilt, grief,
sadness, somatization, profound feelings of generalized hostility, and interpersonal
sensitivity, which may be due to the gradual disfigurement resulted from skin thickening.
The severity of illness, and consequent disability, could be regarded as the central
factors contributing to the development of the psychiatric symptomatology. Paranoid
ideation and psychoticism of the sclerodermatic patients probably reflect a vulnerability
towards the manifestation of more serious, psychotic, psychopathology. Medication should
not be regarded as indifferent in this cumulus of psychological anxiety triggers (
7,
8).
Family members may experience similar feelings. Feelings, in themselves, are neither good
nor bad; one simply “has” them. Sharing them with family members and friends, or with
others who have had the same experiences, can be helpful (
1,
4). Other
factors, such as social support, may also play significant roles (
8). Professional counseling can also help people with scleroderma
and their family members who are having difficulty coping with their feelings. Instead of
“scleroderma patient”, the term “person with scleroderma” should better be used. The person
with scleroderma may be a “patient” in the doctor’s office, hospital or clinic, but he or
she is much more than that. Thinking of oneself as a total person, with a full life, may
help to cope with scleroderma and enable one to maintain a positive, and also realistic
insight (
9). Rebuilding thoughts is the key
step for such conditions (
3).
Hypnosis is defined as an attentive, receptive, focal concentration, with diminished
peripheral awareness. Hypnotizability, expectancies, motivation, absorptive
capacity/fantasy proneness, and attitudes towards hypnosis are five psychological factors
most frequently mentioned as important. The rapport (also referred to as “resonance” and
“harmony”) and social context are identified as social factors.
Evidence supports the usefulness of hypnotic treatments, to address biological,
psychological and social factors, and their interactions in any medical condition. The
biopsychosocial model of hypnosis can help in understanding complex issues, such as
scleroderma. Importantly, this model allows the possibility for multiple factors to play a
role and contribute to hypnotic responding (
10).