Understanding Lupus For Your Loved One

@JaLuvYa (179)
United States
October 22, 2007 7:42pm CST
There are many challenges that face people that have Lupus. One of the biggest is the lack of knowledge and understanding of the disease and it's symptoms by the people who are closest to those who suffer from it. Lupus is a complex and confusing disease. The symptoms can differ from 1 person to the next. It can be major or trivial, with some it is disfiguring and for others unnoticable. Very painful or painless, life threatening or not. It is not a simmple disease. Lupus by definition is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. And that's just the beginning. Common symptons of Lupus are joint pain and swelling, skin rash, malaise or fatigue. Other symtoms can include fever, muscle pain, blood disorders, kidney disease, cardiopulmonary complications, nervous system involvement, and hair loss. Of course people have complained of many other symptoms. There are four types of Lupus: Systemic Lupus which is the most serious and can affect one or all of the organs and can be life threatening if not properly treated. Drug-Induced Lupus developed from taking some prescription drugs to treat things like high blood pressure etc. Discoid Lupus which only affects the skin. Finally, Neonatal Lupus which usually limited to children of mothers who carry a specific autoantibody that comes in contact with the placenta. There are so many things to learn with each of these. There are many sources of information about Lupus. So please if you know anyone with Lupus- take the time to understand the disease so you can be a source of comfort for your loved one. I can tell you from personal experience, it makes it a lot easier when the people around you understand the disease you are dealing with. One organization you can contact for more information is the Alliance for Lupus Research- www.lupusresearch.org. Please share any experiences or information sources that you have. Many Blessings- JA
2 responses
• United States
23 Oct 07
My boyfriend's mom has Lupus. She was diagnosed when my boyfriend was two, so she has had it for about 17 years. I try to understand the disease and I have researched lupus. It is just really hard to understand my boyfriend's mom because she is always taking pills like hard core pills, and is always taking too much than she is suppose to. She also drinks when she has taken her medicine. I know other people who have lupus who are at higher stages than her and do not take as many pills as her. My boyfriend's mom, I think, gives lupus a bad name. Whenever they have family things, she says she cant go out, but when we come back to their house, she usually is not there, she is out shopping.
@JaLuvYa (179)
• United States
25 Oct 07
Sometimes the amount of medication has a lot to do with the doctor treating you as well. Some doctors don't like steroids so they try different routes that may make you not need as many medications to deal with the side effects of steroids. Some doctors I think over prescribe meds. But if she has meds- then she must have a prescription which means your boyfriend's mom's doctor must think they are necessary. I had a doctor like that- I left him and found a doctor that had the same ideals when it came to necessary medications. However, drinking and taking pain meds is not wise at all. Maybe she is hiding behind the Lupus when it comes to family functions- but if family functions stress her out- maybe she's right to avoid them. Stress can cause a flare in her lupus. I have to admit I avoid many things that I feel are going to be stressful and I avoid people that I think are going to be stressful. But I don't say because I'm sick, I admit to it being an uncomfortable situation or simply say "I'm not going to be stressed today. But over all, you can't judge all those affected by Lupus by one case of Lupus. Thank you for your imput though. Many Blessings- JA
• Canada
27 Mar 08
I have it, I live with it. My family don't put any effort to know what I go through every day. I feel all alone. I use to be very active and hard working, now cooking is a challenge to me. Do you have any advice.