06-20-2005, 06:19 PM
hi im stacie im almost 17. i wasnt sure if this was the right place to come to but i hope you all are willing to help...about 10 or 20 minutes ago my best friend who i havent seen in over 3 years told me she has lupus......i signed up here because i couldnt find any support groups for friends..of people with lupus. i just wanted to know if i should be scared and confused or if it is something she can live with...i just dont want her to die...i dont know what im going to do if somethine happens to her....omg im shaking right now...please give me some advice...and help me...
06-23-2005, 06:59 AM
First, don't be afraid! The best thing that you can do for your friend is what you are doing right now: Learn as much as you can about Lupus, its symptoms, its medications and its treatments. It will be a blessing for your friend to have someone who understands her disease and who does not pity her, but knows how to help her get through the ordeal of having this disease. Be empathetic, be patient, be informed, be comforting, be understanding. Remember, this is a life-long illness and will affect your friend both physically and emotionally. If you know about the disease, you will be able to always be a comfort to her.
First, you should be aware that there are different types of lupus. This is important to know because in many forms of lupus, the symptoms are fortunately rather limited.
There is Discoid lupus erythematosus (DLE) and subacute cutaneous lupus (SCLE): These forms of lupus are diseases where skin rashes and sun sensitivity are the main problems; involvement of the internal organs does not occur and life is not threatened. However, both DLE and SCLE may, at times, occur along with the "Systemic" form of lupus. Performing appropriate tests to rule out systemic lupus erythematosus is therefore important when DLE or SCLE is newly diagnosed.
Systemic lupus erythematosus
SLE (or simply "lupus") is a treatable, chronic, autoimmune, inflammatory disease that can affect any organ in the body and in a pattern that varies greatly from person to person. Lupus is characterized by autoantibodies. SLE is a chronic illness, which means that the disease is lifelong (however, most persons with SLE will not be continuously sick for the rest of their lives). Autoimmune means that there is a disorder of the immune system which cannot tell the difference between the person's own tissues and foreign tissues. This conflict leads to inflammation (the normal body response to injury or infection) in various organs which causes the symptoms of lupus to appear. If severe or untreated, this inflammation may cause organ damage and loss of function. Autoantibodies, meaning antibodies directed against one's self, are involved in this process and are typical of SLE.
The cause of lupus is not known. What is known is that lupus is an autoimmune disease. The immune system is the part of the body that protects us against germs such as bacteria and viruses. In the normal individual, certain cells of the immune system make proteins called antibodies that react with foreign substances in the body and destroy them. In lupus, something goes wrong with the immune system so that it also makes antibodies that attack the person's own tissues. The result is an autoimmune reaction which causes the inflammation that affects the specific tissues or organs in SLE.
Women of child-bearing age (15 to 45) are most often affected with the disease. In that particular age group, lupus is 8 to 13 times more common in women than in men. However, the disease does occur in men, in children and in the elderly. According to the Lupus Foundation of America, of the 500,000 Americans estimated to have SLE, the disease occurs in 1 of every 600 white women of child-bearing age and in 1 of every 200 black women. Lupus is therefore not rare and is more common than multiple sclerosis, muscular dystrophy or leukemia.
As yet, there is no cure for lupus. However, researchers studying this disease have made tremendous advances in our knowledge of SLE and this research is continuing. Patients are fully justified in their hopes that a cure will be found.
An extraordinary improvement in life expectancy has occurred in SLE. The survival of lupus patients has improved even further than it was 30 yrs ago (and at that time, the survival rate was good). Several factors have combined to cause this remarkable improvement. Earlier diagnosis, recognition of milder forms of the disease and better use of tests have all helped. However, in my view, the single most important factor has been the discovery and use of prednisone in the treatment of SLE.
Basically, what you and your friend should know is that:
Systemic lupus erythematosus is a chronic autoimmune disease that affects primarily women of child-bearing age. It can be mild or serious and often goes into remission and remains quiet for long periods of time. Treatment is successful at bringing the symptoms under control in almost every case.
If you have been told recently that you have SLE, it is important at this point to be aware of the following facts which bring great hope to lupus patients:
* Lupus can be a serious disease but it is quite clear that milder forms of the disease do exist and are being increasingly recognized.
* Lupus is treatable and much can be done to control it. In fact, with proper treatment it is the rule, not the exception, for physicians (and patients) to succeed in bringing lupus under control.
* Many patients undergo cycles in which the disease becomes quiet after it is brought under control. This symptom-free period is called remission and may last several years.
* Better methods of diagnosis, treatment and follow-up have improved the life expectancy of lupus patients so that nowadays lupus is rarely seen to be fatal.
Now, I am assuming that your friend is around your age and it appears that her diagnosis has been made early. This also means that treatment will start soon. As such, your friend would fall into the category of those who will propably be able to control her symptoms and, with some life changes, be around for a very long time!!
Best of Luck and God Bless You!
07-02-2005, 12:44 PM
Saysusie has given you GREAT information, more than I every could.
Let me add that I know many people who have lived quite well with lupus for many many years. Lots who were diagnosed in their teens, who are now in their 20's, 30's, 40's. Many have children - yess marriage and kids are still possible if that's her wish.
Wander this board, share it with her, and there's another one she might find interesting as well, because of the Spoon Theory story - told by a young woman about your age. It is at http://www.butyoudontlooksick.com/
Talking with others, in person or via boards such as this, is so wonderfully helpful, please stay in touch!