View Full Version : Lupus or a big word that bleeding for no reason??
04-23-2004, 11:40 AM
I went to a kidney doctor last week. He thinks I may have Lupus or this big word of bleeding for no reason and it runs in families. Does anyone know what this long word is? Will it change my life if I have lupus? in two weeks we are going to decide if he wants to do a biospy before I leave for my trip or later...is it wrong that I want to know before I go to thailand? Thanks for listening to me.
04-23-2004, 11:58 AM
Is the word you are looking for hemophilia? Hemophilia is almost exclusively a male disease, but the gene is carried by the females in the family. There are some other clotting disorders as well.
Lupus is still not curable, but there are effective treatments available now that weren't there 30 years ago when my husband and I lost his daughter to lupus, and many live normal, productive lives in spite of having it. Had she been born even 15 years later, she would have survived. I have a very good friend who works full time with lupus.
I suggest you talk with your physician for an opinion about testing before your trip.
Sending warm healing thoughts,
04-25-2004, 04:14 PM
Thanks Donna for replying me. HUgs
04-25-2004, 04:59 PM
My brother-in-law has lupus and has had it many years. He once was so bad he was hospitalized in partial kidney failure. His kidneys are functioning okay and they watch them carefully. Otherwise he has been in remission for years. He leads a normal life and he and my sister just enjoy life and their 3 1/2 year old son. Not that being diagnosed with lupus is no big deal. It is. But it doesn't have to be fatal and it can be put into remission.
04-30-2004, 11:10 AM
Hi, my response to Cookie in below thread may apply to you. Especially note about LCDs/CRTs because that can be a hidden offender similar to hidden allergies. I'm not kidding, since it's absolutely true for me, and note the testimonials linked in the monitorpain site.
04-30-2004, 11:25 AM
I have a bleeding disorder called Idiopathic Thrombocytopenia Purpura (ITP). My hematologist has another patient with both IC & ITP. He suspects a shared immune system problem that two patients would have the same two odd diseases.
05-08-2004, 06:33 PM
I dont know the other word, but my mom has lupus. she has had it for about 20 years now. when she was in her early 20's, she had some problems with her kidneys and had a few operations. My mom is now 50 and has had absolutley no problems with her kidneys. Her lupus is what i would call moderate. Some people it is very mild and they can live every day normally. There are some cases (yet very rare....not trying to scare you) that can be fatal. I know it is not similar, but i compare it to people with diabetes. Some are bad, some are fine. My mom is often very exausted (yet still manages to work full time) and she also gets sore in her mouth that are very painfull, like cancre sore. She gets swelling around her eyes that dont hurt, but embarrass her. She just recetley started getting sores on her chest and on the bottom of her feet. Like I said though, she still works full time and lives a reletivly normal life. I personally think that she would be a lot better if she quit smoking (that cant help the lupus). Oh, another thing that happened with my mom- she lost a lot of weight with lupus and cant gain it back. she has alwasy been a slender lady, but she thinks that she looks too skinny (she doesnt).
Okay, well i just wanted to share with you my knowledge first hand about Lupus. Good luck and hope you are feeling better!
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