Lupus Resources

From TRAGEDY to ACTION

How to live your best life with Lupus

 

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RESOURCES

Introduction

If you have lupus, your mind is probably flooding with many questions. Lupus is a complex disease with no easy answers. It will alter your life and your reality in significant ways. You will encounter several physical and mental challenges. The people you live and work with may not understand the impact of the illness on your overall functioning. They may label you as a hypochondriac, lazy and unreliable. Lupus can mimic other diseases and presents itself differently for every patient. The symptoms can be vague and vary between people and therefore diagnosis can be difficult.

The comforting news is that you can get help and manage lupus with a combination of prescribed treatment and lifestyle adjustments.

Learn about the disease, ask questions, communicate with your doctor and other health care workers, and gather support from your family, friends and community.

Read more on this article by clicking here.

Crazy Became Me: A Lupus Story - Daniella Djan

This insightful and inspirational book is about someone living, and yet thriving with lupus. Daniella Djan is a Ghanaian South African author, writer, educator and speaker and has been living with lupus for the past 17 years. In Crazy Became Me: A Lupus Story, Daniella takes readers on her riveting journey of overcoming the seemingly overwhelming challenges that come with living with this invisible, incurable disease. 

Read more about 'Crazy Became Me' and how to order your copy here.

BLOGS

Taking blood for a lupie is a nightmare. 

You’ve got the elastic around your arm and the nurse slapping your wrist as she says “No veins!” or “Wake up!”, or in my case “She’s so dark you can’t see anything!”

Taking blood for a lupie is about playing the poking game. We are human pincushions. Some nurses are sympathetic, others are far from it. 

“This child is inconveniencing me!” One nurse said of me whilst struggling to locate my vein.

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The nurse pierced me with her tired eyes. “Sit” she whispered with such intensity that her veins popped on her forehead and her lips quivered. I sat on the toilet seat as she watched me closely. It must have been two o’clock in the morning and she was exhausted. Emotionally drained by my constant need for assistance. 

Lupus can strip you of your dignity and pride. At a stage, I was so ill that I was sent to the Palliative Care Unit in the Eastern Cape - a place where the terminally ill were sent to ‘die in dignity’. It was that serious.

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MEDIA & HELPFUL LINKS

National Resource Centre on Lupus – A living collection of up-to-date resources and information on lupus.

 

LUPUS KIDS

 

Lupus Kids Flyer