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View Full Version : 25 yrs of discord lupus



lorie
06-12-2003, 06:02 PM
Hiya lupus family members .. iam 40 yrs old i had lupus for 25 yrs .. sometimes it gets bad than the depression kicks in ... i wish they would come up with something to take it away .... my daughter is going to have a baby this month .. whats the odds that her baby my have lupus ???
I would like to get on thamonde again it sure help me lots ... but its very dangerest to be on ...
any one got any answers to my questions pls feel free to write back
thanks a hole bunches ..
lorie from michigan :oops:

Saysusie
06-17-2003, 07:32 AM
Lorie;
while there has been some suggestions that there is a genetic connection in LUPUS, there is no indication that the disease is transferred from mother to child to grandchild. Most doctors believe that several factors must be present and taken into consideration in order for the disease to develop: Physical factors, biological factors, genetic factors and environmental factors.
There was a study conducted with reference to "relatives" with LUPUS. However, the study was for relatives such as, cousins, aunts, uncles etc. When I asked if my daughter and myself could be included in that study, we were denied because they stated that there was no evidence that the disease was passed from mother to child????
If your daughter does not have LUPUS or any of the signs or symptoms of the disease, I do not think that her obstetrician or pediatrician will test the child for the disease. However, it might be good for both to know that you have the disease in order for them to keep an eye on any development of autoimmune disorders which may present in the child.
With reference to your question about Thamonde - I could find no information on this drug at all :cry: I am so sorry....is there, perhaps, another spelling or do you know what category of drug it is??? Since you say that you have discoidal lupus, is it an antimalarial? It sounds like it might be a corticosteroid! let me know and I will research it further for you!
I hope that I have been of some help. If you need anything further or just want a place to stop and chat about this disease, we are always here for you!
Take care of yourself and your new grandchild :D
Peace and Blessings
Saysusie

Barbara
07-20-2003, 05:50 PM
:lol:
lori
i have sle and my daughter now 26 has yet to be diagnoised with lupus. of course my granddaughter will have to be checkred to. so a diagnosis of lupus doesn't mean it for her although her chances are greater then those that have noone in the family with lupus.
:lol: :lol: :D :D :D
best
barbara

deedee
03-29-2005, 11:27 AM
lori, I have had discoid lupus for 13yrs also. I also have a daughter - all the doctor would tell me is there is no documentation to prove it can be passed down. I worry all the time about it. She is 17 and gets pimples. I am so afraid one of these days she'll pop a pimple and the next thing you know it's lupus lesion.

Poncho
05-16-2005, 10:52 AM
Hi Everyone,
I was invited to do a Lupus genetic study for Minnesota University. They took blood samples and compared them. And they did let us know when the study was finished. I had to answer alot of questions but I figured what else is new I have been asked tons of medical questions since I was 9. The study involved one blood test, and it didnt take much time. Many of my relatives have autoimmune problems. We call each other, laugh, cry and share answers that worked for some, and didnt work for others. I will be glad to share some of our creative answers in the suggestion box section Lauri and others have created here.
I am so glad to have found this website and I am also glad it includes men and women. I was a boy guy man who found it interesting to say the least to live with a disease others cant see. Remind your relatives and friends of this fact, if they want to see Lupus in action they should see your blood after you have been out in the sun. :-) Also use website links that show 3d examples of what a body looks like inside with and without RA or Lupus. My doctors office has many posters that have helped me see what is going on inside and as the disease progresses.

Saysusie
05-18-2005, 06:23 AM
Hi Poncho :lol:
Welcome to our family. I have not seen a 3d show of how lupus affects us internally..but I'd love to!
Yes, it is difficult having a disease that people cannot see. We, too often, hear things like, "Well, you don't look sick!!" UGGGH :x
More and more men are being diagnosed with lupus..I have a dear friend who was just recently diagnosed. So, yes, this site is for absolutely everyone who has to deal with this (and other) auto-immune disease.
I hope you find everyone here to be kind, understanding, comforting and informative.
Again...Welcome
Saysusie