View Full Version : New diagnosis
07-22-2008, 06:57 AM
I don't have lupus, my brother does. I am still trying to process that statement. In May, my healthy 27 year old brother was taken to the ER with stroke like symptoms. MRI, CAT scan, etc., revealed nothing out of the ordinary and they sent him home awaiting the final analysis of his blood work. Yesterday, at his follow up appointment with the neurologist he was diagnosed with lupus.
I guess I'm here after a sleepless night of internet searches, to find some hope. I don't know much about lupus, other than what I have read in the last 24 hours. My brother and I are our only siblings and we are extremely close. I am just looking for information and I sincerely pray this is not a death sentence for him.
Thanks for letting me share.
07-22-2008, 07:20 AM
Welcome...This is an incredibly informative and compassionate site. Im sure there will be more along to greet you soon...
Unlike many years ago, a lupus diagnosis is not an automatic death sentence. Years ago, a lupus Dx meant probable death within 5 years of diagnosis. That is not nearly the case today. I do not know the exact statistics, however, some here do, and Im sure they will come along and let you know what they are.
Lupus is definately a life-altering disease. People with lupus must take very good care of themselves - with regards to rest and nutrition - and also are advised to stay out of the sun. There are hunderds of thousands of lupus patients who still work everyday, raise children - live LIFE - but just have to modify their lifestyle.
Im not sure what your brothers' disease progress is, however, you will learn here that lupus does not mean he is going anywhere anytime soon!!
Take care - and keep learning - that is the best defense against this disease!
07-22-2008, 08:23 AM
Hi Sisterly Love...
I am happy your brother has a sister like you, filled with love, feeling his fears...Having great support is an asset to our survival too...to be understood is what many of us yearn for. I am happy you are looking for answers to understand the disease and the emotions your brother may feel...You are a wonderful sister..hugs.
Having a disease that has no cure, makes one feel scared, questioning their, your brother or their brother's mortality.
It is difficult to determine the number of individuals who die from health complications of the disease. However, due to improved diagnosis, early detection and disease management, most people with the disease will go on to live a normal life span.
There are several members who are in their 50's here and managing very well. Maybe some older, keeping their age a secret? Me, I am 47 and doing quite well, no organ involvement. We are leading an almost normal life style had we not had the disease. Limited in some areas, but able to enjoy through modifications.
Many of the preventive measures we, who have Lupus take, should really be adapted by all, those without this disease or any one. Eat properly, healthy, avoid sugar, avoid junk, exercise daily..some form. Avoid the sun..manage stress. A healthier lifestyle and of course, take prescribed medicine to treat and manage our symptoms. Take an active roll in our health care and don't just let the disease happen to us, to be a victim..
They are continually making strides in the care of our disease...
Suggest your brother to visit us too..many times we need the support of those who are "like" us. We don't have the patent on understanding but we understand it a little bit different, a little better than those who don't have the disease, especially when we are frustrated...and feel guilty.
Example..there is tired, but the tire you feel from a day at the office or a evening jog differs so vastly from the fatigue we feel from the disease.
There are many great reads out there..Each page turned you will learn more....
The Lupus Book by Daniel Wallace...
Living with Lupus by Sheldon Paul Blau...
New Hope for People with Lupus by Theresa Fox DiGeronimo
Read about here, come for support for yourself...we understand it from all perspectives. Lupus affects everyone in the family unit...
07-22-2008, 10:42 AM
Hello Sisterlylove :D
As has been mentioned before, your brother is very lucky to have you and your desire to learn more about Lupus, and how it affects your brother, will be one of his greatest assets.
It is very, very important to us that we have someone who understands our disease and who is on our side. Often, we have problems with doctors not believing our symptoms, loved-ones not understanding why we are so tired and so sick, and employers who refuse to accommodate us. All of this tends to add to our stress and stress is one of the major causes for Lupus symptoms to worsen, for flare-ups to occur more frequently and last longer.
As Oluwa suggested, it might be a good idea for your brother to also drop in to our family here, so that he can see how much we understand him and how this disease can affect him. However, I want to commend you for caring enough to want to learn about Lupus in order to be a help to your brother. You and your brother are truly blessed to have one another.
You've already been given some suggestions as to how your brother can begin to manage his life with Lupus. The goal is to live a relatively normal life and to avoid flare-ups. As Lauri and Oluwa mentioned, this will require some lifestyle changes, but those changes are things that almost everyone should do anyway.
Our family members here are very informative, supportive, understanding and comforting. If you, or your brother, have any questions at all, need any information, or just need to talk, you can always come here to us. There will always be someone here who will do all that they can to provide what you need.
Welcome to our family and know that you are not alone.
Peace and Blessings
07-23-2008, 02:44 AM
Welcome to the forum. Your brother is very lucky to have a sister like you that is willing to find out all about Lupus. I am a very long time survivor of this illness as I have had it they believe from the time that I was 5 years old. I will be 50 in December. Years ago they use to think of it as a death sentence, but not anymore. They have a lot of good medications out there now. Your brother will probably have to alter his lifestyle some, for example limiting exposure to the sun and avoiding stress as much as possible. He will have to listen to his doctors and take the medications. He should do ok. Keep posting and also if you like, like Saysusie said that your brother can post too. We all care and understand.
07-23-2008, 05:08 AM
Thanks for all of your responses. I can't tell you how much I appreciate your support. This is a scary time for my brother and I. Knowledge and support seem to be the only things that help. Thanks again for being so welcoming. I am going to encourage my brother to join this wonderful family.