Question

How does a person living with Lupus manage the disease and how does it affect their daily activities.

Answer 1

Lupus is an autoimmune disease condition with a complex and broad variety of symptoms. Autoimmune means, the body is attacking the body, or the immune system of the body fight against of the cells of some organs. So it can affect any part of the body. The cause of the condition remains unknown, and no clue on how to prevent it, also no treatment as such to completely cure the condition. All these make it a very critical and life threatening disease.

Even though there is no medicine to cure it fully, there are different treatment modalities to decrease the symptoms and help to improve the quality of life of the person affected.

Joint pain, rashes over nose and cheeks, swollen glands, sensitivity to light, fatigue and poor circulation in the fingers are the commonest symptoms of a lupus affected person.

Flares and remissions are the major sections of this disease process. Flare means when the symptoms get trigger up and cause unwell effect on the patient, and remission means the symptoms get reduced and the person comes back to almost normal health.

How to live a life with maximum quality with lupus?

There are some modifiable risk factors, which can be modified to reduce the symptoms. Let’s discuss on them.

• Restrict smoking and Alcohol intake completely:

Smoking, alcoholism, chemical exposure etc can be triggering factors of Lupus, according to scientist. So keep away from such exposures.

• Modify diet

A diet rich in fresh fruits and vegetables and whole grains is best for lupus care. Some researchers advise to avoid certain foods like garlic and alfalfa sprouts. Also meat and poultry should be consumed in a moderate level.

• Protect from sunlight

The lupus affected people are sensitive to light, and should avoid direct sunlight exposure. Wear clothes to cover full body, to decrease sun exposure to minimum, and use sunscreen lotions when necessary.

• Avoid certain medicines:

Never take any medicines without prescription, as many medicines trigger lupus flare. Inform the doctors about this condition, even though the person is seeking medical help for some other illness. Certain mood stabilizers and antibiotics have proven effects on triggering the illness.

The treatment of the lupus aims at reducing flares, treating the symptoms when flares occur and also preventing the damage to vital organs.

The types of medications used in treating lupus are anti inflammatory medicines, corticosteroids, immune suppressants and hormone supplements, depending on the symptoms.

The person may present with a wide range of physical changes, even with treatment like weight gain, rashes on face, hair loss etc. this may affect the young people especially women.

How the family life get affected:

The person affected may seem normal to other family members sometimes, and suddenly the symptoms worse when the flare occurs. The family needs to be educated on the illness, its cause, symptoms, effect and care.

Change in the physical appearance, hair loss, weight gain may affect the intimacy between partners also. Joint pain, fatigue, depression, mouth sores, and vaginal ulcers and certain medications, can lower the interest in sex and intimacy.

Proper communication will help to deal with negative perceptions and misunderstandings. Also the help of a registered psychotherapist can guide the couple in distress.

What’s important as family is a mesh of friends and neighbors. Friends need to have a proper understanding of the lupus and how it presents during flaring.

Work life management:

With some changes in the work environment, they can continue the work, like flexible work hours, sharing the job etc. If the physical or psychological demands for the job is beyond the limits, it’s always better to change the job, or making the job part time.

Sometimes the person may need a break from the job, when the flaring occurs , in worse situations. Then he or she can request the employer for leave benefits.

How to manage personal life?

Physical, emotional, spiritual changes are essential needs in the care of lupus, within the family, within the profession and within the social circle. The person may better understand the life of others, the person can share his or her experiences and can well appreciate the world around.

Living a stress free life with positive thoughts are essential for a lupus affected person to live a normal life.