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Living with Lupus: The Challenges for Patients and Caregivers

March 3, 2014

The most difficult thing about living with lupus is the cycle of symptoms flares, which tend to be unpredictable. When you need during unexpected flares, depend on a PCA to be there. 

If you or a loved one live with lupus, you know the symptoms of this chronic autoimmune disease are unpredictable and can flare in a moment. While some people with lupus are able to live day to day without significant difficulty, the disease severely damages joints and organ systems in others. Both patients and caregivers need to expect the unexpected when they are living with lupus and prepare for flares. Many families rely upon the services of a Personal Care Assistant they hire from a home health agency.

What is Lupus?

Since medical science is just starting to develop an understanding of lupus, many people have some misconceptions about the disease. While lupus is a disorder of the immune system, it is actually the opposite of HIV/AIDS, which suppresses the immune system. When a person has lupus, their immune systems mistake normal, healthy cells for disease-causing invaders so immune cells attacks and destroys the cells and tissues. Since we do not have any way to tell where the immune system will strike next in lupus, doctors have a great deal of difficulty in providing patients and their families with a prognosis and what symptoms to expect.

How Prevalent is Lupus?

According to the Lupus Foundation, 1.5 million people in the United States are living with lupus and doctors make 16,000 new diagnoses of the disease each year. Since the symptoms of lupus mimic other diseases and initially seem vague, these statistics may actually underestimate how widespread this chronic condition is. As doctors identify new blood tests for lupus that identify the markers associated with abnormal immune function, we will have a better idea of how many people are affected by the disease.

Who is Diagnosed with Lupus?

While women of color between the ages of 15 to 44 are the group that is most likely to be diagnosed with lupus, people of any age, sex, or race can develop the disease. Since scientists have not identified definitively what causes lupus, they cannot say who is at greatest risk of developing the disease or recommend ways to prevent it. Research suggests that a combination of genetic and environmental influences may cause a person’s immune system to turn against the body, but scientists still need to conduct further studies to pinpoint what these causes are.

What are the Symptoms of Lupus?

Since the immune system attacks different areas of the body in people who have lupus, there is not a specific profile of symptoms for the disease like there is for other chronic conditions like diabetes. Some of the most common symptoms of lupus include:

  • Pain and swelling in joints
  • Muscle pain
  • Unexplained fevers
  • Chest pain when taking deep breaths
  • Oral ulcers
  • Loss of hair
  • Constant fatigue without any apparent reason

Other lupus symptoms that are not as common include the following:

  • Headaches
  • Dizziness
  • Anemia
  • Seizures

As you can see, these symptoms are also indicative of other disorders and conditions, which is the reason people suffer with the disease for years without a diagnosis.

How Does Lupus Limit People in the Every Day Lives?

The extent to which lupus impairs a person in his or her daily activities depends upon where the immune system attacks. For example, if the immune system attacks a person’s joints, he or she may have difficulty moving. Other people whose immune systems have ravaged their kidneys and renal system may need dialysis. Sometimes lupus may go into remission for years, so the condition has no effects whatsoever, and then the disease flares and the person is incapacitated with pain and fatigue.

How Can Lupus Patients and Caregivers Cope with the Disease?

In some ways, managing lupus is almost impossible since people with the condition never know when symptoms will flare and how they will affect their daily activities. Experts recommend that patients focus on what they know about their particular condition to limit the effects on their daily activities For example, people with lupus need to take their medications exactly as prescribed, even though they might seem unnecessary when the disease is in remission. Research suggests that stress can trigger lupus flares, so it is important to learn how to manage stressful situations and avoid them, if possible. Another useful finding from clinical studies is that exposure to sunlight also tends to exacerbate flares. People with lupus need to wear protective clothing and use a strong sunscreen to protect themselves from the sun.

Caregivers can support their loved with lupus by making sure their home environment is as calm and stress-free as possible. They also need to prepare for unexpected downturns in their family member’s condition. Some of the way caregivers can make sure they are ready to support their loved one include:

  • Form a support network: In addition to the family member’s medical team, caregivers need to enlist the help of other family members and friends to assist with errands, supervision, meal preparation, and housekeeping. Many family members also hire a PCA to assist with these chores during flares.
  • Inform and educate your employer: Since lupus is so unpredictable, caregivers might need to take time off from work with little to no notice. Most caregivers find that they need to educate their co-workers and supervisors about lupus and the unexpected flare associated with the disease. If your employer knows the situation, he or she can make accommodations, such as working remotely, that allow you to work and care for your family member.

While living with lupus can be a challenge, with adequate preparation and support, both you and your loved one can minimize the effect of the disease on your everyday lives.

Resources and Support for Families Coping with Lupus

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