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How Do I Find Lupus Caregivers Like Me?

By January 30, 2014 July 13th, 2020 No Comments

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What is lupus? Medical News Today describes it as “an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue…[resulting] in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs.”

If you’re caring for someone who has lupus — or has been recently diagnosed — reach out. Connect with other caregivers and find support, advice, and resources to keep you afloat when the illness pins you down.

Cope with lupus
Start at the beginning. Peruse this online information booklet about lupus via the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the National Institutes of Health) to understand the basics: what causes lupus, who gets it, how doctors can help, and more.

Learn more about lupus
A site called The Us in Lupus is a virtual treasure chest of lupus information and resources about what comes next. From expert Q&As and informative webcasts to a unique tool called My Lupus Log — a free mobile app that tracks symptoms to discuss with your doctor at your next appointment — you’ll find what you need to educate yourself.

Find support groups and counseling
The National Institute of Arthritis and Musculoskeletal and Skin Diseases strongly recommends lupus caregivers and patients:

  • Consider support groups and counseling. Each can help you realize that you’re not alone. Group members teach one another how to cope.
  • Consider other support from your family as well as faith-based and other community groups.

The Lupus Foundation of America has a terrific user-friendly feature that makes browsing their site, lupus.org, a breeze. On the left side of the page, the “Get Answers” section gets down to business with a frequently asked questions link and subsequent links for those still undiagnosed, those who are diagnosed, friends or family members of those with lupus, and caregivers of those with lupus.

The “I’m a Caregiver” page covers a range of caregiver-related issues, like how to be prepared in an emergency or how to manage being a long-distance caregiver. Some local chapters of the LFA offer lupus navigators, individuals who help site visitors find the information they need, and Lupus Link Up, an online discussion board where caregivers and individuals with lupus can connect and exchange information. Find your local chapter via this interactive map.

Don’t forget: the 101 Mobility blog is also a great resource for caregivers of all ages. Find advice on proper lifting techniques, modifying the home for caregiving, and more.

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