PATIENT NAVIGATOR CORNER MAY 2025 | BY RITA PICCIN

The Patient Navigator program is funded in part by an earmark from the State of Ohio and managed by the Ohio Department of Health.

In this issue of “Living With Lupus,” we are examining how lupus can be inherited from one generation to another in some families and how it impacts individuals and families. Research has shown that genes can play a role in developing lupus, and that 20 percent of lupians will have a family member who already has lupus or may develop the disease.1 And, while lupus does develop in people with no family history of the disease, other autoimmune disease are often present in some family members, which may make them predisposed to developing lupus.2

Lupus affects every aspect of life, whether or not there is a family history of lupus. Learning about lupus and how to manage the disease is definitely a family affair. According to the Lupus Foundation of America Caregiver Toolkit, the following are some things that you should pay attention to:3

Education

Ideally, the best place to get started in tackling lupus as a family, is to know it. Education is the key. While learning about lupus is ongoing, because new research is improving our understanding of lupus everyday, getting a basic understanding is an important foundation.

At the Greater Ohio Chapter, we offer a New Patient Education Class monthly. This class is offered virtually, and it is open to any lupus patient (newly diagnosed or diagnosed years ago), family and friends. This is a basic “lupus 101” class. In this class, we cover what lupus is and its symptoms, who tends to develop it, the burden of the disease (including financial issues and impacts on the ability to perform daily activities), how it is diagnosed and treated, and how to manage the disease.

We also produce several educational summits throughout the year. These in-person and virtual conferences are wonderful opportunities to learn from lupus experts on a variety of topics. We have an extensive archive of past conferences and educational videos.

If you prefer written information, we have that too! We can mail an information packet, which has information about lupus and also about our chapter’s resources and services. You can also submit questions online, and a patient navigator will be sure to contact you.

The Greater Ohio Chapter patient navigators are great sources of education. We give information over the phone, by email, by mail, and sometimes by text too. Every patient navigator is ready to answer your questions about lupus. If we don’t know the answer, we will do research to find it. In addition to recommending our New Patient Education Class, we can also suggest articles and past recordings of summits and webinars.

Be Aware

Lupus is unpredictable and impacts each individual lupus patient differently. Its impact can vary daily, both physically and emotionally. There can be days of low or no disease activity and symptoms (remission), days of increased disease activity and symptoms (flares), and days that are in between. Knowing how lupus impacts the lupus warrior, as well as the signs and symptoms that a flare or a new medical issue is occuring, will help the lupus patient and the family stay on top of the disease and get medical help in a timely manner.

Be Open to Change

Being aware of how the lupus patient is feeling also helps the family understand that plans and activities may need to be changed, and that a lupus patient may need more or less help. It is important that lupus patients and caregivers frequently communicate, so that it is easier to make necessary changes. And, if the lupus patient is working, keeping colleagues informed is also key to making adjustments at the workplace.

These are some tips to help the lupus patient and their family adjust:4

• Maintain a manageable schedule with time for breaks.

• Reassign household responsibil- ities as needed.

• Ask friends or extended family members to help around the house when possible

• If the lupus patient doesn’t feel up to doing an activity, saying “no” is okay.

• If there are children, talk to them about lupus and how it may affect life at home.

Be Emotionally Considerate

When dealing with lupus, feelings of sadness, helplessness, and uncertainty about the future are very common. These feelings are a normal part of living with a chronic illness, both for the patient and the caregivers. Understanding this can help the whole family be thoughtful, caring, and patient with one another as they all navigate the lupus journey.

In addition to supporting each other, finding outside support can be useful too:4

• 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.

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

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

• Attend a support group. The Greater Ohio Chapter has many support groups throughout the state that meet in person or virtually.

There are many resources available to help the whole family learn to live and manage lupus. You are not alone. If you have questions or would like information, please contact the Greater Ohio Chapter office at 1 (888) NO-LUPUS, 440-717-0183, or info@lupusgreaterohio.org. We are happy to help!

1Lupus facts and statistics. Lupus Foundation of America. https:// www.lupus.org/resources/ lupus-facts-and-statistics

2Pons-Estel GJ, Alarcón GS, Scofield L, Reinlib L, Cooper GS. Understanding the epidemiology and progression of systemic lupus erythematosus. Semin Arthritis Rheum. 2010 Feb;39(4):257-68. doi: 10.1016/j.semarthrit.2008.10.007. Epub 2009 Jan 10. Review.

3Caregiver Toolkit. Lupus Foundation of America. https://lupusgreaterohio.org/ find-resources/toolkit-forcaregivers/

4Coping With Lupus: A Guide. Lupus Foundation of America. https://www.lupus.org/resources/ coping-with-lupus-guide