While there is no proven cure for scleroderma, much can be done to prevent, minimize or alleviate its effects and symptoms. Scleroderma symptoms vary greatly from individual to individual; the manner in which each person responds to treatment also varies greatly; and there are many treatment options. It is important that a physician experienced in scleroderma management works out an individually tailored program to meet the specific needs of a person with this disease. Close cooperation with the physician will help him or her develop such a program.
The emotional aspects of scleroderma
A common reaction to being told that one has a disease such as scleroderma is “Why me?” It is unknown why some people develop the disease and others do not. One does not bring scleroderma upon himself or herself; therefore, one shouldn’t feel guilty or responsible for the illness.
A person newly diagnosed with scleroderma may feel alone and uncertain about where to turn for help. 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 or depression. Family members may have similar feelings.
Feelings in themselves are neither good nor bad. One simply has them. Sharing them with family and friends or with others who have had similar experiences can help. Professional counseling also can help people with scleroderma and their family members who are having difficulty coping with their feelings.
We try to use the term “person with scleroderma” instead of “scleroderma patient.” The person with scleroderma may be a “patient” in the physician’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 to lead may help to keep scleroderma in perspective and enable one to maintain a positive but realistic attitude.
Building a health and support network
Participating actively in one’s own health care is of prime importance to the person with scleroderma. It is equally important to cooperate and communicate effectively with the physician who is managing the disease. While these two—the person with scleroderma and the physician—are the focal point of the management “team,” many other people and resources also form a health and support network.
Family and friends can provide emotional support for the person with scleroderma, encourage him/her to follow the recommended treatment program, and assist in carrying out activities that he/she finds difficult.
The health team begins with the physician, but can include many other health professionals such as medical specialists, nurses, physical and occupational therapists, and psychologists or others trained in counseling.
Joining a scleroderma support group, such as one affiliated with the Scleroderma Foundation, enables the person with scleroderma to meet and exchange information with others who have similar problems, as well as to learn more about scleroderma. The Foundation also manages an online support group community at www.inspire.com/groups/scleroderma-foundation.
Taking Charge of Systemic Sclerosis (TOSS)
Often, persons with scleroderma do not know other people with the disease and may live in a state where there is no chapter of the Scleroderma Foundation or in a community where there are no support groups available. This web based self-management program was designed is to help you learn about scleroderma, manage your symptoms and learn strategies to help you advocate for yourself. Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life.
Register today to gain skills and confidence to manage Systemic Sclerosis symptoms, as well as strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.
There also are a number of general common-sense measures that a person with scleroderma can take to enhance his/her well-being. These measures include:
- Avoid over-fatigue by taking it easy and getting sufficient rest. Knowing your own limits does not indicate you are lazy.
- Learn to control and minimize stress.
- Eat well-balanced meals and maintaining a sensible weight.
- Practice good hygiene habits, especially of the skin, teeth, gums and feet (including the wearing of cushioned and well-fitted shoes).
- Avoid smoking. The health risks of smoking are well known but frequently ignored. It is particularly dangerous to persons with scleroderma because it can have effects on blood circulation and lung function.
More information coming soon!