Company: Commissie Lupus/APS NVLE
Web site: http://www.nvle.org
E-mail: lupus.aps.commissie@nvle.org
For World Lupus Day this year we have chosen a strong message, a strong message with a strong image.
In many countries the wolf is the symbol of Lupus. In others, the butterfly prevails. Living with lupus, we have no choice but to live with a wolf by our side. He is an unwanted companion… but what if he is a companion who can be tamed?
Over the years, options to tame the wolf have increased, thanks to the dedication of researchers and doctors, and the commitment of patients participating in research. Here are some of the ways you can tame your wolf and take control:
• Visit your specialist doctor regularly. Be sure to see a lupus specialist. Lupus is a complex disease, which varies hugely from one person to another. Experience is key.
• Be actively involved in your illness and treatment. You shouldn’t be a passive participant; instead you and your medical team should work together and take decisions together.
• Keep yourself informed about your disease. Make sure your information comes from reliable sources, the internet can provide lots of information but it can also be a dangerous place.
• Take your treatment regularly. Don’t interrupt your treatment: it is important for disease control and quality of life. Even if you don’t feel sick, your lupus is still there. Understand what medication is for and how it works. Talk to your doctor about any concerns you have. Never hide information from your doctors; they need to be aware of any other medication or supplements you take. Even ‘natural’ treatment/supplements can have side-effects and interact with your disease or medication.
• Stay in touch with your local patient organisation. They will supply you with important contacts, information, and good advice. We can help each other by exchanging our experiences. Your experience can help others, and others can help you.
• Remember to live your life. Lupus is not the only thing in your life. At first it is easy for everything else to disappear and lupus take over. Don’t let that happen. Don’t hesitate to talk about your illness, but also make sure to do other things, to follow your dreams and projects. While lupus may bring limitations, there are so many things that remain possible. Try not to worry too much and stay positive. Keep moving, and keep life as normal as possible.
The wolf won’t go away any time soon; more research is still needed to understand how to fully manage lupus, but following the above recommendations and learning new tools from your national lupus organisation or your doctors can help you become a great ‘Wolf Tamer’.
Por Content Editor V
29 de Abril de 2015
.jpg)
0 Comentarios