Information for Patients
Lupus Center provides information for patients
How do I tell my friends and family about lupus?
Dealing with a life-long illness such as lupus can be hard. Your friends, family, classmates, teachers, bosses or coworkers may not understand how lupus affects you and what you can do. Members of the Lupus Center health care team at Cincinnati Children's Hospital Medical Center can help you understand the disease and explain it to your family and friends.
You can tell them lupus is a chronic disease that changes over time, but it is not contagious. Let them know that lupus and the medications used to treat it can sometimes change your physical appearance, your energy levels, your ability to do certain tasks and your mood.
Talking openly and honestly can help your friends and family understand these changes when they occur. Tell them as much as you think they need to know, when they need to know it. If they want more information, you can refer them to the Lupus Center.
Remember, it is possible to have lupus and have an active, rewarding life. It is important you take control of your illness and not allow it to take control of you. Having a positive attitude will make it easier for your family and friends to relate to you as they did before you were diagnosed with lupus.
Self-Management Tips for People With Lupus
Studies show that people with lupus who are well-informed about the disease and participate actively in their own care experience less pain, require few doctor visits, build self-confidence and stay more active. The National Institute of Arthritis and Musculoskeletal and Skin Diseases, a unit of the National Institutes of Health, refers to these studies in urging patients to develop a plan for maintaining wellness. The concept of wellness involves paying close attention to body, mind and spirit.
Wellness
One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic illness. There are many different ways of managing stress, including exercise and relaxation techniques such as meditation and yoga. Find the one that works best for you. If you feel depressed, talk to a member of the Lupus Center health care team about counseling or possibly medication.
Self-management
Self-management does not mean doing everything yourself. Developing and maintaining a good support system is also important. This support system could include family, friends and members of the Lupus Center health care team. Support groups can provide emotional help and boost self-esteem and morale. Group members can learn from each other how to handle stress. Other types of groups -- such as school, religious or community groups -- can help keep you active and involved with other people and projects.
Communication
It is very important for people with lupus to follow up with their health care team even when symptoms are quiet and all seems well. Results from follow-up exams and lab tests on a regular basis allow members of the Lupus Center health care team to note any new symptoms or other changes and to identify and treat flares. Timely visits with your health care team can also allow you to keep up to date with flu or other vaccinations. These vaccinations may be strongly recommended because people with lupus can be more susceptible to infection.
How can the members of the lupus team help you?
This Lupus Center multidisciplinary health care team provides the full range of health care services needed for the best possible treatment of lupus. Team members communicate with each other to provide you with the best care, personalized for each patient.
Here are some tips to help them help you:
- Always provide complete and accurate information about your health.
- Be honest and share your point of view with members of the health care team.
- Make a list of your questions and concerns before you meet with members of the health care team.
- If you don't understand something, ask that it be more fully or clearly explained.
- Don't hesitate to discuss sensitive issues, such as contraception or pregnancy.
- Do not make any changes in your treatment plan unless you discuss them first with one of the doctors.
What should I expect at my first visit to the Lupus Center?
Your first visit to the Lupus Center will involve getting to know you, your medical history and your current condition. Members of the Lupus Center health care team will have in-depth discussions with you and meet family members you bring with you.
Here is a basic rundown on what you can expect at your first visit:
- Register at the front desk in the Lupus Center.
- You will be called and have vital statistics taken, such as height and weight, and brought to an examination room.
- A nurse will ask you about your medical history and any medications.
- You may also see a fellow, a physician who has completed training as an intern and resident and is receiving further training or research in a specialty, such as nephrology or rheumatology.
- You will see an attending physician (link to glossary), a Lupus Center staff physician.
- You will have a complete physical exam (link to relevant part of Lupus section).
- You will have laboratory tests (link to relevant part of Lupus section), including a complete blood count (CBC) and urinalysis.
- Depending on your medical condition and your personal needs, you may talk to other members of the Lupus Center health care team, such as the nutritionist, social worker and the physical and occupational therapists.
- If necessary, you will receive prescriptions for medications.
- Lupus Center health care team members will talk to you about lupus and self-management of the disease, answer your questions, and tell you how you can continue to educate yourself and talk to your friends and family about lupus.
- Research team members may ask you if you would like to participate in a research study and explain what that would involve.
What can I expect at future visits to the lupus center?
Not all visits to the Lupus Center will be the same. The first visit will probably take longer than other visits, but at all visits you should be prepared to discuss your health history and any changes since your last visit. You should also know what medications you are on, including dosage, and what refills you need.
You will receive follow-up exams and lab tests on a regular basis to allow members of our team to note any new symptoms or other changes. This will also help to identify and treat flares.
When do I need to call the lupus center?
You should call the Lupus Center if you:
- Develop new symptoms or have concerns between scheduled visits
- Have chest pain
- Get severe, persistent headaches
- Have problems with vision
- Find it difficult to follow your treatment plan
- Want to ask about test results
- Run out of medication between visits and don't have refills
- Are not able to take medications as prescribed
- Have questions or concerns about disease or medications
- React differently to medications
When do I need to have the doctor paged or go to the hospital?
You should have a doctor paged or go to the hospital if you have:
- Chest pain with shortness of breath
- Severe pain of any kind
- Fever
- An allergic reaction to medication
- Difficulty taking medications or are unable to take them at all
- Questions or concerns that shouldn't wait until the next business day
