Find Lupus Specialists near you

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FAQs:

What is a Lupus Specialist?

A lupus specialist is adept in the evaluation and treatment of Systemic Lupus Erythematosus (SLE). It is a systemic disease with autoimmune etiology. In SLE, the immune system attacks its tissues, causing organ damage. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels.

What are Lupus Support Groups?

Lupus support groups are places where people affected by this disease can meet, in-person or online, to provide each other with emotional support, camaraderie, practical advice for living with lupus, and information about treatment and management strategies.

How Does Lupus Support Groups Help?

According to the Lupus Foundation of America, living with lupus can be challenging. This is because some symptoms, such as fatigue, depression, and joint pain, may not be visible to others. Despite being invisible symptoms, they can significantly impact a person’s quality of life. Additionally, lupus can impact a person’s mental health. The Lupus Research Alliance estimates that 25 in 100 people with lupus experience depression, and 37 in 100 have anxiety. Sharing and spending time with other people going through the same or similar experiences may help a person to manage their condition. A 2018 study of African American women with lupus states that social support is key for people with a high disease burden.

What is Lupus?

Systemic lupus erythematosus (lupus) is a chronic (long-lasting) autoimmune disease that can affect many parts of the body. Lupus occurs when the immune system, which normally helps protect the body from infection and disease, attacks its tissues. This attack causes inflammation and in some cases permanent tissue damage, which can be widespread – affecting the skin, joints, heart, lungs, kidneys, circulating blood cells, and brain.

What is Usually the First Sign of Lupus?

Lupus is an autoimmune disease that may impact any organ in your body. Early signs include a butterfly-shaped skin rash on the face, fatigue, hair loss, and pulmonary and kidney problems. Symptoms of lupus typically start in early adulthood between ages 15-44. However, early signs and symptoms may be hard to detect because they’re similar to those of other conditions. Lupus symptoms vary in severity and affect everyone differently. Flare-ups are when symptoms get worse, while remission is when they improve for some time.

What are the 4 Types of Lupus?

When people talk about lupus, they’re usually talking about systemic lupus. But there are four kinds of lupus: 

1. Systemic lupus erythematosus (SLE), the most common form of lupus

2. Cutaneous lupus, a form of lupus that is limited to the skin

3. Drug-induced lupus, a lupus-like disease caused by certain prescription drugs

4. Neonatal lupus, a rare condition that affects infants of women who have lupus

What Causes Lupus?

The cause of lupus is unknown, and researchers are still trying to learn what may trigger or lead to the disease. Doctors know that it is a complex autoimmune disease in which the body’s immune system attacks the person’s tissues and organs. Studies show that certain factors may trigger your immune system, causing the disease. These factors include:

1. Genes. Research shows that certain genes play a role in the development of lupus. The different forms of these genes carry instructions for proteins that may affect the immune system. Researchers are studying how high levels or low levels of these proteins may be important in the development of the disease.

2. Environment. Exposure to certain factors in the environment – such as viral infections, sunlight, certain medications, and smoking – may trigger lupus.

3. Immune and Inflammatory Influences. Researchers think that if the body does not remove damaged or dead cells normally, this could trick the immune system into constantly fighting against itself. This process could cause an autoimmune response, which could lead to lupus. In addition, researchers are studying different cell types and how changes could lead to lupus. 

What are the Symptoms of Lupus?

The symptoms of lupus vary from person to person and can range from mild to severe. You may have just a few symptoms affecting just one area of your body, or you could have many symptoms throughout your body. Symptoms may come and go, and you may develop new symptoms over time. Some symptoms happen when the disease causes inflammation in organs, such as the joints, skin, kidneys, lining of the heart and lungs, brain, and blood cells. Symptoms of lupus can include:

- Arthritis, causing painful and swollen joints and morning stiffness.

- Fevers.

- Fatigue or feeling tired often.

- A rash that appears on the face across the nose and cheeks; this is called a malar or “butterfly” rash

- Round scaly rashes that can appear anywhere on the body.

- Sensitivity to the sun that may cause a rash.

- Hair loss.

- Sores, which are usually painless, in the nose and mouth (most often on the roof of the mouth).

- Change of color in the fingers and toes – blue-purplish, white, or red – from cold and stress (Raynaud’s phenomenon).

- Swollen glands.

- Swelling in the legs or around the eyes.

- Pain when breathing deeply or lying down, from inflammation of the lining around the lungs or heart.

- Headaches, dizziness, depression, confusion, or seizures.

- Abdominal pain.

How is Lupus Diagnosed?

Lupus can be hard to diagnose because it has many symptoms that are often mistaken for symptoms of other diseases. Many people have lupus for a while before they find out they have it. If you have symptoms of lupus, tell your doctor right away. No single test can tell if a person has lupus. But your doctor can find out if you have lupus in other ways, including:

1. Medical history. Tell your doctor about your symptoms and other problems. Keep track of your symptoms by writing them down when they happen. Also, track how long they last.

2. Family history of lupus or other autoimmune diseases. Tell your doctor if lupus or other autoimmune diseases run in your family.

3. Complete physical exam. Your doctor will look for rashes and other signs that something is wrong.

4. Blood and urine tests. The antinuclear antibody (ANA) test can show if your immune system is more likely to make the autoantibodies of lupus. Most people with lupus test positive for ANA. But, a positive ANA does not always mean you have lupus. If you test positive for ANA, your doctor will likely order more tests for antibodies that are specific to systemic lupus erythematosus (SLE).

5. Skin or kidney biopsy. A biopsy is a minor surgery to remove a sample of tissue. The tissue is then viewed under a microscope. Skin and kidney tissue looked at in this way can show signs of an autoimmune disease.

Your doctor may use any or all of these tests to make your diagnosis. They also can help your doctor rule out other diseases that can be confused with lupus.

Is Lupus Fatal?

Yes, lupus can cause death. But, thanks to new and better treatments, most people with lupus can expect to live long, healthy lives. The leading causes of death in people with lupus are health problems that are related to lupus, such as kidney disease, infections, and heart disease. Work with your doctor to manage lupus. Take your medicine as your doctor tells you to and make healthy choices, such as not smoking, eating healthy foods, getting regular physical activity, and managing your weight.

Is Lupus Hereditary?

No single gene or group of genes has been proven to cause lupus, although certain gene variations have been linked to lupus. Lupus does, however, appear in certain families. For example, if an identical twin develops lupus, there is a higher chance that the other twin (who has the same genes) will develop it,  while there is a smaller chance for fraternal twins according to a study published in 2012.  Studies suggest that there is an increased risk of developing lupus if a family member has been diagnosed.

The majority of lupus cases that develop are referred to as sporadic, which means no known relative has the disease. Although lupus can develop in people with no family history of lupus, there are often other autoimmune diseases in some family members.

People of African, Asian, Pacific Island, Hispanic/Latino, Native American, or Native Hawaiian descent have a greater risk of developing lupus, which may be related to genes. In the U.S., communities of color have higher and more severe disease activity, which may also be linked to social determinants of health like poverty or lack of access to health care.

There is no known cause for lupus, but it’s likely that lupus results from several factors interacting with each other. For example, we know that genetics, environmental exposures (such as certain medications or severe exposure to ultraviolet rays), and hormones all likely contribute to the development of lupus.  The microbiome, or the collection of bacteria and other microorganisms that live in a person’s intestinal tract, may also be important.  While the disease mostly affects women, at least 10% of men live with lupus.

Is Lupus Contagious?

Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone. Lupus develops in response to a combination of factors both inside and outside the body, including hormones, genetics, and environment.

How to Treat Lupus?

Alternative medicine is any treatment that you use instead of traditional medicine. Some people with lupus try to ease symptoms with:

- Acupuncture

- Biofeedback

- Massage

- Meditation

- Chiropractic treatments

- Herbs and other supplements

Studies haven’t shown that these things work in place of medical treatment. Some supplements may make your lupus symptoms worse.

However, some research has found that acupuncture, meditation, and biofeedback can relieve pain and stress when used alongside traditional treatments. This is called complementary medicine.

What is a Support Group?

Dictionaries define a support group as a group of people with common experiences or concerns who provide each other with encouragement, comfort, and advice. Members meet to share coping strategies, to feel empowered, and to build a sense of community. It is a safe space where members can talk openly and honestly about their feelings.

Support groups are composed of others who have been through similar issues, such as lupus. Because of this, members feel more comfortable sharing their experiences and discussing their feelings. With others who have experienced similar situations, most people usually will feel less isolated.

Support Network for Lupus Patients

Research shows that getting the help you need (known as “perceived social support”) improves your quality of life, whether you have lupus or you’re a caregiver. A strong support team will have people who can help in different ways. However, it’s not necessary, or likely, that everyone in your support network can meet all of your needs. The important thing is that you can count on these people when you need them.

The individuals who make up your support network can include:

1. Family members: A lupus diagnosis affects the whole family. You may find that cousins, aunts, uncles, siblings, and your spouse will empathize and naturally step up into the role of supporter.

2. Neighbors: People in your neighborhood often can provide a home-cooked meal during a stressful time, or they can simply be a nearby source of comfort.

3. Coworkers: The people you work with can help by being empathetic about your situation. You may need to telecommute, take a leave of absence, or use flex time, which will require the cooperation and support of your colleagues.

4. Lupus support group members: People in this network know about lupus and can offer strategies and suggestions based on their experience.

5. Medical team: If you're a caregiver, your loved one's providers and office staff, social workers, and other professionals will probably understand what you are going through and can be supportive of your caregiving role.

6. Therapist or counselor: You must have an outlet for your emotions. Check to see if mental health services are included in your employer's health coverage. If not, look for free services in your community.

7. Teachers and school instructors: When you are caring for a child with lupus, keep his or her teachers informed and let them know how they can help.

Types of Support

The first part of putting together your support network is identifying what you need. Define what you think will fill that void, and explore all the different opportunities that may be available. Know the different types of support to rely on.

1. Emotional Support

Life with lupus can be emotionally challenging. Having people to help you talk through problems or support you through rough spells is essential. The people you rely on for emotional support should:

- Listen to you.

- Believe you and believe in you, and care about you unconditionally and nonjudgmentally.

- Help you stay strong in the face of an incurable, invisible illness, or as you help a loved one facing health challenges.

- Be there for you in an emergency.

2. Physical and Mental Wellness

Physical activity benefits the body and mind. But it’s also important not to overdo exercise. Experts can assist you in finding the right balance and advise you on what types of activities are safe and beneficial, given your abilities. In addition to the medical team that manages lupus, seek out people who can:

- Provide expertise in physical health (physical therapists, fitness instructors).

- Provide expertise in mental wellness health (massage therapists, yoga or tai chi instructors, psychotherapists).

3. Task Related Support

Your social support team can pitch in to tackle basic tasks of daily life that you may find difficult because you are feeling fatigued or overwhelmed. People on your team could:

- Serve as an advocate (at doctor’s appointments, with the insurance company). 

- Help with daily chores (dog walking, prescription pickups, organizing fun activities).

- Lend a hand at work (contribute hours to a sick leave bank, share job duties, fill in during an emergency, commute by ride-sharing).

- Give financial guidance (an accountant or a financial adviser).

4. Support Group

Seeking social support through an in-person group model. Such groups help people see that others have the same problems. Support group members can:

- Suggest new ways of coping with problems.

- Help you feel less isolated.

- Discuss the issues you face openly and without judgment.

5. Family Support

Managing your own or a loved one’s lupus while also taking care of a family can pile on stress. Your support team can help keep family life on track. Look to your team to perform these tasks:

- Assist with child care (rides to and from school, babysitting, carpools to extracurricular activities).

- Help with meal preparation (grocery shopping or preparing frozen portions for later use).

6. Spiritual Support

Spiritual support can help buffer some of the stress and negativity that arises from living with lupus and from caregiving, and it can bring a greater sense of meaning to one’s life. Members of your spiritual support team can provide:

- Instruction in meditation, guided imagery, or deep breathing exercises.

- Self-help strategies via books, webinars, or support groups

Benefits of Lupus Support Group

Support groups offer:

1. A safe space. Within the privacy and comfort of a support group, you can build relationships with other members who can understand what you are experiencing.

2. Shared experience. The majority of those in attendance at a support group will be just like you. You can share your day-to-day challenges — for example, your daily medication list!

3. An opportunity to be yourself. Support group members can empathize with you, something family and friends cannot always do. The space to be yourself can be both a tremendous relief and also extremely emotional.

4. A place to obtain and share information. A support group is a great place to give and receive relevant information on your condition and/or associated conditions and medications.

5. A place to find out if you are eligible for external financial aid/support. Who better to ask what is available than people going through the same thing as you?

How to Support Someone with Lupus

After hearing about a lupus diagnosis, people can provide support with the below methods.

1. Learning about lupus

Some people appreciate their friends and family learning about lupus. However, when doing this, it is important to consider the source of the information. In some cases, the person with lupus might not mind educating others, but repeatedly doing this can also be taxing. If someone prefers not to explain the condition in detail, loved ones can also learn by reading online articles or studies or by listening to other people’s stories.

2. Offering emotional support

Emotional support can look different, depending on what a person needs. It may help to:

- visit or call them just as regularly as usual, or more, if they want

- be generous with reassurance and consenting hugs

- allow them time to talk about lupus if they want to or offer a distraction if they prefer to think about something else

- continue socializing together, even if this means adapting activities to make them accessible

set aside time for doing enjoyable things

- If a person seems like they are having difficulties, loved ones can also help by encouraging them to seek professional support.

3. Offering practical support

Offering practical help with tasks can be a valuable way to help someone with lupus. Some examples of this kind of support include:

- driving the person to appointments

- cutting the grass

- helping with cleaning

- walking their dog

- providing homemade freezer meals

When someone needs a lot of help, it can help to delegate tasks among multiple people. For instance, a neighbor could help maintain the yard while a family member could help look after a pet.

However, remember that people with lupus all have differing physical needs that vary day by day. As a result, it is important to follow the person’s lead.

If they want to try to do as much as they can independently, or on some days they need more support than usual, listen to them. Trying to step in and do everything for them can be counter-productive and might feel patronizing.

What to Say to Someone with Lupus

Learning a loved one has lupus can be difficult. People may worry they will say the wrong thing or not know what to say.

First, it is important to know that there is no perfect response. What matters is whether someone expresses genuine care. Focusing on this can help individuals think of what to say organically.

Additionally, the goal should not be to try and make the person feel better or cheer them up. Doing this can sometimes result in people feeling that their emotions are not important or valid.

Instead, try to provide a safe space for the person to say how they feel and how their condition is affecting them. This could involve:

1. Asking how they are: A direct question such as this serves as a welcome invitation to share updates and difficulties.

2. Validating their feelings: There is no right or wrong way to feel about having lupus. A person can validate how someone else is feeling by saying things such as “it makes complete sense you feel that way” or similar phrases.

3. Active listening: This means giving a person full attention, allowing them to speak, and then reflecting on what they have said back to them. This shows understanding.

4. Showing empathy: Others cannot always know what it is like to have lupus, but they can still show empathy by imagining themselves in the person’s position. For example, they might say, “That sounds like it was scary” or “That is so frustrating.”

5. Being available: Support from caring friends and family members is important for people with any chronic condition. Letting the person know they have someone to talk with when they need it can help.

What Not to Say To People with Lupus

While there is no perfect thing to say to someone with lupus, there are some things to avoid saying. These statements can minimize another person’s feelings. They include:

1. “I know how you feel”: Unless a person has had a serious condition, they do not know how it feels to have lupus. It is also a suitable idea to avoid making comparisons between two very different experiences. For example, the tiredness that comes from insufficient sleep is not the same as the fatigue of lupus.

2. “It could be worse”: Although people can say this with good intentions, it minimizes the seriousness of living with a chronic condition.

3. “Things will get better”: Lupus does not have a cure, so saying demonstrates a lack of understanding. People need to avoid trying to predict the future, especially if they do not know much about lupus.

How to Find the Lupus Support You Need

Staying connected socially can help you put lupus in perspective and build a support system. Make sure you spend time doing activities you enjoy with other people, and identify family members and friends you can turn to when you need to talk to someone.

In addition to sharing with your family and friends, there are other ways you can find support:

1. Individual therapy can help you cope with issues like depression and anxiety.

2. Couples therapy can help you and your partner communicate as you both adjust to your diagnosis.

3. An online support group can help you engage with other people affected by lupus and learn tips from people dealing with similar experiences.

Life with lupus can be difficult at times, but it doesn’t have to stop you from doing the things that matter to you. Many people with lupus live happy, active lives — and you can, too.

How to Find And Join Lupus Support Groups Near Me

Lupus support groups foster a positive social experience by creating a safe space for people living with the illness to share their feelings, hopes, or worries. They also allow for lupus education among patients — talking about experiences with symptoms, treatments, and trials can help others on their path to managing the disease. If you’re interested in taking part in one of the many lupus support groups out there, here are a few places to get started.

Advocacy groups: Many advocacy organizations have boots on the ground throughout the country and online as well. For example, the Lupus Foundation of America (LFA) is dedicated to providing support through local chapters. These groups can connect you with local experts, events, and other resources to help make life with lupus just a little bit easier. This is a great way to connect with other patients in your area, too. If there’s no chapter near you, there are online options available too.

Facebook: Facebook groups are a wonderful way for those affected by lupus to share their experiences. A quick search on Facebook can connect you with a group that may be of interest to you.

Reddit: r/lupus is where Reddit users can go to connect, look for advice, and exchange stories. The group includes nearly 10,000 members, and discussion topics run the gamut from symptoms and diagnosis to treatment options to lupus-related memes. The community is supportive and welcoming, and members seem eager to share their experiences — either to get advice or to help others going through something similar.

What to Do If There are No Lupus Support Groups Near You

Even though there are millions of people living with lupus, sometimes established support groups are spread a bit thin – especially if you don’t live in a larger city. There are a few options to consider if you aren’t able to find a lupus support group near you.

1. Start Your Own Support Group

Chances are other people with lupus probably live in your vicinity and would like to have a support group available to them. It may seem daunting to be in charge of a group, but you could start simply by having a cup of coffee and getting to know other lupies. The group can be as formal or informal as you would like it to be. If you decide to lead your group, be sure to prepare a topic, an icebreaker, or a few questions for your first meeting.

2. Find Something Similar

If you aren’t ready to start your group, try looking for a less specific support group instead. Perhaps you can find a group that focuses on autoimmune diseases, chronic pain, or chronic illness in general. Lupus tends to overlap with other diseases, and you will likely benefit from meeting a wider variety of people living with a chronic illness. A chronic pain support group recently started in my area, and I’ve learned a lot from attending since lupus does cause me to have high pain levels frequently.

3. Look for Online Support Groups

While a more generic support group may be useful for having an in-person experience, they may not be able to help you with things that are unique to lupus. In that case, you may want to consider finding an online support group.

Sources:

Dasari MD

Very Well Health

Lupus Foundation of America

Medical News Today

Lupus News Today

Antidote

New Life Outlook

NIH

Healthline

CDC

WebMD

Medical News Today