Blessings to all!
My life with lupus has been full of ups and downs, and the biggest blessing has been to get to know many other lupus patients who also share in this journey. Over the past few years, my health condition has gotten much more precarious, and my pain much worse. I am finding that I have to step back from many of the things that have brought me great joy, including early-morning radio visits and extensive writing. You who are also journeying can understand the reality of this, but also understand that, although I cannot be as active as I would like, you remain in my prayers and I hope you will hold out a prayer for me, too.
Always, joy and peace,
Lupus (systemic lupus erythematosus) is an autoimmune disease in which the body's immune system turns on its own organs and tissues. It is much like being allergic to oneself.
The diagnosis of lupus is complicated, and involves a comprehensive physical and hemotological examination of the patient, as well as an extensive look at a patient's past medical history. The American College of Rheumatology has established a list of criterion, and a patient needs to fulfill several of the criterion in order to be diagnosed with lupus.
Because there is no one "lupus test," or easy way to diagnose the disease, patients often go years between flares and before they are diagnosed. Lupus patients with internal manifestations of the disease often look very healthy, and can be subject to discrimination on that basis.
There are no definitive numbers of how many people in the United States actually have lupus, but recent studies indicate that there might be as many as 1.5 to 2 million women, men and children with the disease in the U.S. Lupus can strike at any age, but most of the diagnoses are made to women in their childbearing years.
Lupus symptoms can vary from fevers, joint pain, extreme fatigue, brain fog, and photosensitivity to kidney, lung, heart, and central nervous system involvement. There is not cure for lupus; doctors try to treat the symptoms with various medications, some of which have short- and long-term side effects that can also be debilitating. Disease progression and severity are different in each patient; approximately 50 percent of lupus patients will have major organ involvement. Each year, lupus patients die from the disease or from complications such as infection or cardiovascular involvement.
The psychological toll of life with lupus is immense. Because of its unpredictability, the hopes and dreams of many lupus patients are shattered, and their personal relationships, career aspirations, and spiritual wellbeing can be severely eroded, if not destroyed. The divorce rate among lupus patients is above the national average, and many lupus patients are, at one time or another during the course of the disease, treated for depression and anxiety. Lupus patients must avoid exposure to sunlight, so even normal daily activities can be impacted and in some cases done away with completely. Outdoor sports, trips to the beach, hikes, and even shopping expeditions are all questionable at best. We sometimes feel like moles!
But although lupus patients must live with lifelong, daunting physical and emotional challenges, many are very resilient and develop coping skills within the parameters of their disease involvement. Lupus patients can be everyone's heroines and heroes!
There is a great need for more research into the causes of and treatments for lupus. There is also a huge need for more public awareness of the disease, both because it will enable people to be diagnosed more rapidly and because it will help others understand what lupus patients struggle with on a daily basis.
For further information, please see my book, TAKING CHARGE OF LUPUS: HOW TO MANAGE THE DISEASE AND MAKE THE MOST OF YOUR LIFE, and Dr. Daniel Wallace's book THE LUPUS BOOK. Also, contact the Lupus Foundation of America: www.lupus.org