The Lupus Support Center

The Journey:
Just Found Out
Dealing With It
Recover & Thrive
Worst Case

Facing the Initial Impact of Lupus

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Lupus

Every person is unique, but when you face a challenge like lupus, you are never alone.  Countless women and men have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge. 

TSC has scoured the Web to assemble links to the very best lupus resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this lupus guide even more helpful to survivors like you.   

JUST FOUND OUT 

Survivors Say: Best Resources for Lupus

The Big Picture

If you have lupus, your immune system attacks healthy cells and tissues by mistake. This can damage your joints, skin, blood vessels and organs. Occurring more frequently in women than men, there are four types of lupus: Systemic lupus erythematosus, the most common and serious, as well as discoid lupus erythematosus, drug-induced lupus erythematosus and neonatal lupus.   Affecting between 1 1/2 and 2 million Americans, lupus is an autoimmune disease.

Signs and Symptoms of Lupus

Do you know how to recognize lupus? Here's a good overview to common signs:

Questions to Ask Your Doctor About Lupus

WebMD.com: Newly Diagnosed with Lupus

Your Lupus

Like other autoimmune disorders, getting a definitive diagnosis of lupus may not be easy:

What type of lupus do you have? Find out more about each kind here: 

You want to be sure you have the right diagnosis, so a second (or third) medical opinion may well be a good idea:

Lupus Foundation of Minnesota: What Counts in a Second Opinion

Your World

Receiving a diagnosis of lupus is likely to be very upsetting. You may feel a swirl of emotions - from fear and anxiety to anger and sadness. That's all normal. Remember that many others have been through what you're going through, so reaching out now to a support group, whether online or in person, can help. Be sure to call on your loved ones to add their support too:

Here are some tips on how to talk to your family about your disease:

Lupus Foundation of America: Lupus Now magazine - Q&A: "How do I talk to my family about my illness?"

Lupus Myths

  • "Only women get lupus."
  • "Lupus is contagious."
  • "Lupus is hereditary."

Dealing With Lupus

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Information and Recommended Links for Survivors

Types of Treatment

Lupus is treated with a variety of different kinds of drugs, including anti-inflammatory medications, corticosteroids, anti-malarials, and immunosuppressive drugs. These sites cover more about medication for easing lupus symptoms:

Possible Treatment Side Effects

Alternative Treatments

Creating a Support Circle

  • Set up your TSC survivor profile.
  • Join support groups of other survivors or start your own.
  • Interact and provide updates on your TSC profile or in the TSC forums.

Insurance & Work Matters

Covering the cost of treatment for lupus can be a source of stress; these resources out can help:

Health-care Providers Who Can Help

The types of health-care providers who may be involved in your lupus treatment include:

  • Rheumatologist, a doctor who specializes in the diseases of joints and muscles
  • Clinical immunologist, a doctor who treats immune system disorders
  • Nephrologist, a doctor who treats kidney diseases
  • Hematologist, a doctor who treats blood disorders
  • Dermatologist, a doctor who treats skin problems and diseases
  • Neurologist, a doctor who treats problems with the nervous system
  • Psychologist  
  • Occupational Therapist
  • Social Worker

Resources to Find Doctors

To Find a Rheumatologist

American College of Rheumatology: Geographic Membership Directory

To Find a Dermatologist

American Academy of Dermatology

The Emotional Rollercoaster

Dealing with lupus on a day-to-day basis can be difficult, especially during times when you find your "flares" hard to manage. Make sure to reach out to friends and family and all of the resources that are out there to help you. Remember: You are not alone:

Books Survivors Recommend

Communicating with Your Health-care Providers

The Doctors of USC: Talking to Your Healthcare Provider About Systemic Lupus Erythematosus

  • Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear and ask questions you may not have thought of.
  • Don't be afraid to ask any questions you need the answers to, even if you may be scared of the answer.
  • Write down any questions you have ahead of time and jot down answers as your health-care provider walks you through them.  Don't be afraid to ask for clarification on anything.

Dealing with Lupus: Information for Co-Survivors

How You Can Help

Assist your friend or family member with their day-to-day duties or chores if they need help or ask for it, but try to find a good balance so as not to throw off their daily routine.

What to Say    

  • "You have a lot of treatment options and I will help you find the ones that are right for you."
  • "I am here to support you."
  • "Just let me know what you need."

What Not to Say

  • "At least it's not fatal."
  • "Isn't that the werewolf disease?"
  • "You look fine."

How to Build a Support Network

  • Set up your TSC co-survivor profile.
  • Create a support group for your friend or family member.
  • Interact and provide updates on your loved one's progress.

Recover & Thrive

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Recovery

You have come a long way since you were first diagnosed with lupus, and you've learned a lot about how to manage your symptoms and flares. Here's some more guidance to keep you as healthy and strong as possible -- and avoid conditions for which you're at increased risk -- now that you've reached a new stage in your survivor journey:

You may want to keep up with the latest research and continue to explore the best ways to manage your condition:

Lupus Research Institute: Lupus Research Information, Prevention, Treatment, Cure

Give Back

Now that you've made your way into this stage of your journey with lupus, you might want to consider sharing your experience with someone who's newly diagnosed or struggling with lupus. What helped you during your diagnosis and treatment might be just what someone else needs to hear now - they may find your words an inspiration and a comfort.

Worst Case

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Some people do die of lupus, but this happens far less commonly than is generally believed and the prognosis (outlook) for those with lupus varies greatly. Overall, it is very good for most people with lupus. The two most common causes of death in people with lupus are kidney failure and infection:

When You're Facing Death

Sometimes, though, there is nothing medicine can to do prolong life. If you or your loved has received this devastating news, these resources may be of some comfort as you go through this devastating loss:

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