Chinese-language lupus resources
How does lupus impact Asian Americans?
People of all races and ethnic groups can develop lupus, but lupus is more common among Asian Americans than in the general population. This appears to be true for almost all Asian-American ethnic groups, no matter their heritage. It’s not known why lupus is more common in Asian Americans, although some scientists think that it is related to genes.
Lupus resources available in Chinese
The Lupus Foundation of America has several guides available in Chinese, which can be useful for those with lupus, doctors, caregivers, and anyone wanting a better understanding of this disease.
- Understanding Lupus: A Guide
- Living with Lupus: A Guide
- Coping with Lupus: A Guide
- Diagnosing Lupus: A Guide
- Treating Lupus: A Guide
- Children and Lupus: A Guide
- Teenagers and Lupus: A Guide
Asian community lupus support group
Join us for our support group specifically for those in the Asian community every 3rd Thursday of the month from 6-7:30p PDT. Email the group facilitator, Karen, at LFAAsiangroup@gmail.com to request the meeting link.
Becoming a Lupus Caregiver
A lupus caregiver is someone who is committed to providing direct care and support to a person diagnosed with lupus. Caregivers can be parents, a spouse, children, other family members, or friends. In some cases, there may be more than one caregiver.
Because each lupus diagnosis is so unique, care needs and caregiving responsibilities may vary. You may need to provide more help, such as day-today-care (e.g., keeping track of medications); or, less frequent care (e.g., going to doctor visits with your loved one). The more you know about lupus and how to cope with lupus, the better prepared you are to be a good caregiver.
Here are some tips to help you create a caregiving plan that meets the specific needs of your loved one:
Educate yourself about the nature of lupus and the symptoms of the disease. Pay attention to your loved one’s specific symptoms and be aware of any changes that may suggest a flare. Be open to lifestyle changes that might come with living with lupus, and be emotionally considerate of your loved ones feelings of sadness, helplessness, and uncertainty that are normal when living with a chronic illness.
Help your loved one learn about lupus
Support your loved one’s efforts to learn more about lupus by helping them do research and ask their health care team questions. Assisting them with learning about the disease allows them to become an advocate for themselves and may help them understand that the impact of lupus may be too large for one person to deal with alone.
Going through the learning process together also strengthens your relationship. A strong relationship can help your loved one feel more comfortable receiving care, especially if decisions are made together about caregiving needs.
Practice communication skills
Healthy communication allows loved ones to connect with each other. Communication with your loved one in a positive way, but also be realistic about the new normal that the lupus diagnosis creates. Make time to talk about this transition and how it affects each of you. Be open about your needs as a caregiver, and ask others for help if you need it.
Create a care file
One of the most important things you can do is create a care file for your loved one. This can be kept in a binder, a file folder, or entirely electronically, and it should include the following:
- Personal information (such as date of birth, identification, and insurance information)
- All current diagnoses and medical history
- Contact information for all doctors and other health care providers
- Dates of doctor visits and changes in treatment
- Names of medications, dosages, and any special precautions
- Emergency contacts
Develop a daily care plan
A daily care plan is a list of duties and responsibilities that address the daily and long-term needs of your loved one. A good plan will also include instructions to those who share caregiving duties when the primary caregiver is unavailable. During stressful and hectic times, this can help avoid a potential crisis.
Help manage your loved ones’ finances
As a caregiver, you may be involved in managing your loved one’s finances or even planning for a secure financial future. Here are some tips to help you get started:
- Create a budget: Use a budget to track the financial requirements and needs of your loved one. You can use pen and paper, create a detailed excel spreadsheet, or use an app to create and track expenses.
- Consider using a financial planner: A professional financial planner or a legal financial advisor can review current cash flow and monthly bills, look for tax savings, and provide advice on estate planning and investments. You can find a financial planner through your local bank or through a professional organization, like the National Association of Personal Financial Advisors or Financial Planning Association (FPA).
- Decide if you need legal authority to make decisions: Caregivers should be familiar with the legal documentation that gives someone authority to make decisions about health, financial, and legal affairs on behalf of another person. These documents can serve to protect your loved one’s wishes and can grant authority for you to make certain decisions, as determined by your loved one.
- Become familiar with your loved one’s health insurance: It’s important for you and your loved one to feel knowledgeable about their health insurance coverage. Review their health insurance policy together. Keep a file with benefit summaries, any out-of-pocket costs that may occur, and insurance premium costs for tax and financial planning purposes. If the technical language used in the policies are too difficult to understand, discuss the policy with an insurance agent. Read more about what caregivers should know about health insurance
Lupus resources in English
About the Lupus Foundation of America
At the Lupus Foundation of America, we are on a mission to end the brutal impact of lupus. Our goal is to improve the quality of life for all people affected by lupus through education, research, support, and advocacy. We’re dedicated to reducing time to diagnosis, ensuring people with lupus have safe and effective treatment options, expanding direct services for people affected by lupus, and increasing access to treatment.