May 2, 2019 |  written by IVX Health

Explaining Lupus to Your Friends and Family

May 10th is World Lupus Day. It is the perfect time to continue raising awareness about lupus and to remind yourself that living with lupus is a continuous, ever-changing battle that requires support from your friends and family. 

What is Lupus?

The Lupus Foundation of America estimates that 1.5 million Americans and roughly five million people worldwide have a form of lupus. Education is the first step for your family and friends to understand what you’re going through. While it may be frustrating to explain what lupus is on multiple occasions, most people truly do not understand what lupus is or what it looks like as a condition. Lupus is a chronic autoimmune disease that can damage any part of the body (ex: skin, joints and/or organs) and therefore, affects people in different ways — ranging from mild to life-threatening symptoms. There is currently no cure for lupus, but options such as infusion treatments with Benlysta or Saphnelo make symptoms more manageable.

What could the symptoms look like?

Lupus is most commonly developed in women between the ages of 15-44, however, it can also affect men and children. The most commonly recognized symptom of lupus is a butterfly shaped rash on a person’s face (typically where the sun would naturally hit your cheeks and nose), but all of the symptoms are far more wide-ranging and less easy to notice from the outside looking in. Symptoms may include:

  • Fever
  • Fatigue
  • Joint pain and/or swelling
  • Photosensitivity (skin rash that worsens with sun exposure)
  • Raynaud’s Phenomenon (fingers or toes that turn white or blue with cold exposure or stress)
  • Blood clots
  • Breathing problems
  • Anemia (low count of red blood cells)
  • Chest pain
  • Headaches
  • Confusion and/or memory loss
  • Dry eyes

Communicating to Friends and Family about Lupus

Sharing information about lupus and your experiences living with the condition can be a great way to receive support if needed. Sit the person you’re sharing with down and be sure to clearly explain what having lupus entails for you personally. Make sure to let them ask questions if you’re comfortable so they can better understand how having lupus affects you.

If you’re having a flare-up, be honest about it. One of the hardest parts of having a chronic illness is learning to ask for the support you need when you need it.  If you’re having trouble, rely on the people who love you to come through for you.  Remember that your friends and family likely aren’t mind-readers, so be specific about what they can do to help and understand.

Treatment for Lupus at IVX Health

If your lupus treatment regimen includes biologic infusion therapies such as Benlysta or Saphnelo, consider IVX Health for your care.  We offer appointments that fit your schedule (days, evenings and weekends) in comfortable private suites so you can enjoy your time while receiving treatment. If you’re ready to experience how we are redefining care for patients with chronic conditions, contact us to schedule an appointment at one of our many convenient locations.

Treatment at IVX Health

If biologics like Remicade, Actemra or Orencia  are a part of your chronic illness treatment plan, then consider choosing IVX Health for your ongoing care needs. IVX Health makes it possible to receive your therapy in a comfortable, convenient, and private environment.

With a private suite for every patient, you can watch your favorite Netflix show or movie on the big screen TV in each room, use a laptop or other mobile device to surf the web, or simply hang out with family and friends. We always have chairs for guests, and each center has a family room that is spacious and private if you need to bring your kids to your treatment. We also offer flexible appointment scheduling – including evenings and Saturdays – at any of our convenient locations.

At IVX Health, we truly are invested in helping you live your best life. If you’re ready to experience a new kind of infusion clinic, click here to learn how to move your infusion or injection therapy to IVX Health.