The Best Lupus Resources
Living with lupus can seem incredibly isolating, especially if you don’t know anyone else around you with the disease. However, there are tons of lupus resources and websites you can use to gain information on lupus and connect with others who are going through the same thing you are.
Lupus.org is run by the Lupus Foundation of America and provides tons of great resources for both lupus patients and caregivers. The website has a wealth of information, including hundreds of questions lupus patients have asked and the website (and their on staff doctors) has answered.
This includes everything from questions about diet and lupus to having a robust sex life with the disease. It even answers questions such about what can be done to counteract the dreaded weight gain from prednisone.
Additionally, the website offers information for local chapters so you can meet others with lupus, participate in lupus walks and find clinical trials in order to help doctors with new medication.
Lupus.org is absolutely invaluable and one of the first websites I look to when finding information out about lupus. It is also a great place to refer family and friends when they are curious about various aspects of the disease and will always give a clear, concise, easy to understand scientifically based answer.
St. Thomas Lupus Trust
Although based in the UK, the St. Thomas Lupus Trust offers great information for people all over the world. The St. Thomas Trust gives a comprehensive list of lupus specialists in not only the UK, but also in mainland Europe and the USA, making it a little bit easier to select a doctor to help with your diagnosis.
In addition, they do tons of fundraising events (including skydiving!) that allow lupus patients and friends and family of lupus patients to get involved and raise money for the cause.
Medical professionals can also log onto the site and get up to date on the latest information pertaining to lupus. Patients can scroll through profiles of other patients and read their stories, helping them feel a little less alone (my story is on there!).
And lastly, if you want to purchase a knick-knack to benefit lupus research, St. Thomas is the place to stop. They have loads of adorable gifts, including special edition and exclusive Beatles paraphernalia — Julian Lennon, John Lennon’s eldest son, is their patron.
His childhood friend, Lucy Vodden, was the inspiration for the song “Lucy in the Sky with Diamonds.” Lucy would later die from complications of lupus SLE, which inspired him to support the charity.
Looking for a book on lupus can be particularly daunting, as many of them claim cures by doing different things such as eating certain foods or abstaining from certain foods. Although it is up to you to explore whether or not a certain diet will work for you (I definitely don’t advocate anything in particular), there are other books you can check out that do not claim to cure, but simply help you better understand your disease.
Next page: more informative resources for lupus.