Tuesday, February 12, 2008

Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life by Maureen Pratt and David Hallegua, M.D.

Quite a few years ago, a loved one was diagnosed with lupus after very drastic medical issues arose. Since then, he has had to make many adjustments to his life and we have all had to learn more about this often unknown illness. I've actually had this book on my shelf for quite some time, but finally decided to pick it up and read it. I don't know if it was just plain avoidance on my part, but I now have a much better understanding than I ever have of the disease.

This book is written for the person actually diagnosed with lupus. It covers a variety of topics about dealing with the disease . . . from emotional to medical to financial to even dealing with relationships and faith. Though it does not get into a lot of medical jargon or medical effects, it does help one to better understand the full effects lupus has on one's life. This disease is not rare; however, it is not well-known and many misrepresentations and rumors are out there. It really helped me to become more aware of what my loved one is currently experiencing, has experienced in the past, and what he will experience in the future.

For those of you not familiar with the disease, here are 5 facts that I have chosen at random to share with you . . . afterall, education can decrease ignorance!
  1. There are three main types of lupus . . . one that effects individuals externally (skin, hair, etc.), one that effects the individual both externally and internally (meaning it can greatly effect the organs), and one that is drug-induced. All forms are an autoimmune disease, or a disease that causes one's immune system to stop protecting the body from infection and begin attacking the body instead.
  2. Lupus is NOT contagious!! Though a direct cause has not been found, both genetics and environmental factors are thought to contribute to its onset.
  3. Lupus is unique to every individual. Some individuals will have organ involvement, some may end up with related illnesses (i.e., rheumatoid arthritis, Sjorgen's Syndrome, etc.), some may be greatly affected by the sunlight, etc. It is this uniqueness combined with the symptoms showing up over an extended period of time that makes the disease so difficult to diagnose to begin with . . . as well as treat!
  4. For those individuals with organ involvement (i.e., associated kidney disease), the same drugs that are used in chemotherapy for cancer patients are also used for lupus patients but in smaller doses. Not only do the lupus patients then have to deal with the symptoms associated with the disease, but also the symptoms that may be associated with the treatment as well.
  5. According to this book, the costs of treating lupus can range from $2000-$5000 for those without organ involvement to as much as $12,000-$25,000 for those with organ involvement. And, the scary part . . . these amounts only include the direct costs associated with the disease in ONE YEAR!! It does not include the loss of pay from having to take time off of work, making changes to the environment, etc. Yikes!

Hopefully, you are now more familiar with this disease. If you know someone with lupus, I highly recommend that you read this book and do your own research. There is truly much to learn!

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