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-   -   Looking for information on lupus... (https://www.justmommies.com/forums/f379-autoimmune-diseases-and-disorders/934450-looking-for-information-lupus.html)

ragmama February 17th, 2008 12:57 AM

Hi, ladies! I hope you don't mind my dropping by...I'm always on the lookout for information about lupus (systemic) and wondered if anyone here may be able to offer insight.

My DH's mother had lupus...DH does not, although I've read that it is more likely to pass from mother to daughter than from mother to son. One of DH's sisters has some early symptoms of it (arthritis), although she hasn't been diagnosed.

Now that we have two daughters, I've been trying to find out whether it's possible and/or likely that it would have passed through DH and on to them...? Obviously there are no signs yet, but I definitely want to be on top of things if there's an increased chance that they'll have it - know what to watch for, etc.

I've also been doing more research on vaccinations, and considering a delayed and selective schedule for our girls. From what I've read, systemic lupus is a condition in which the immune system is hyperactive - and vaccinations depress the immune system. So does this mean that vaccinations can help protect against lupus by slowing the immune system down? Or am I reading too much into that? (I did read that the Hepatitis B vax has had adverse results in people with a history of lupus, so we've already declined that one with our younger DD.)

If anyone can offer insight - especially about the family history thoughts - I'd really appreciate it. I've searched and searched online for info, but there's just not much to be found.

la_sirena February 23rd, 2008 04:57 PM

I have SLE and have been told my daughter has a 30% chance of inheriting it on the mother's chromosomal strand. So that is scary and something I often beat myself up about.

The Lupus system is very, very hyperatice. Everything can be inflamed and hurting at once. We're talking pleurisy in the lungs, migraines, blurriness in the eyes, liver failing, and polyathritis.

I would definently think of delaying the vax or going on a very selective schedule if you're worried about hurting the immune system.

I'm pretty anti-vax after my own daughter had a hideous reaction to Polio. She was in hospital and was so, so sick which now scares us all tremendously.

You can always make an appointment to speak with a genetics doctor about it all.

Good luck to you guys. I am praying my daughter is never affected with this disease.

survey77777 March 17th, 2008 05:06 PM

I have an autoimmune disorder and connective tissue disease that has been undergoing diagnosis for about 15 years now. The verdict at this point is that it is most likely SLE but they are still concerned about missing out on additional illnesses should I get stuck with an incomplete diagnosis. I should be hearing more definite news this month when I start seeing a Dr. who specializes in lupus pregnancies. I will definitely ask his opinion on this issue when I'm there as it is obviously a major concern to me.
I have read most everything there is out there on SLE both through being affected and through being a nurse. The studies I've most commonly seen is that although there is a tendancy for autoimmune disorders to run in families...the most common thread seems to be amongst siblings.
It is very important to remember that lupus affects everyone differently. Some people are affected by horrible kidney, brain and blood problems...but many others and I'm tempted to say most live very healthy healthy lives with periods of active illness (flares) and periods of remission.
When you are researching this illness...please be sure that the sources you are learning from are reputable. You can get a lot of inaccurate information out there.
I am also part of an active lupus support and public awareness group. I will provide you with a few links to check out here...but I would also be happy to answer any more specific questions for you if you want to PM me. If there are any specific questions you'd like me to ask this specialist that I am so fortunate to be going to see April 15 please let me know and I will get back to you with any answers.
Please don't stress out too much about this. I am honestly remaining optimistic that by the time any child of yours or mine may be affected by this illness, that there will be new advances in medicine that we haven't even thought about yet. They are making great steps with stem cell research which will change the lives of many of us.
Here is a quote from www.lupuscanada.org

"Is lupus an inherited disease?
Systemic lupus erythematosus (SLE), or lupus, is a chronic inflammatory disease which can affect the skin, joints, muscles, serous membranes, blood cells and different organs of the body. The underlying abnormality of SLE is a dysfunction of the immune system, which becomes over-activated and attacks the body’s own cells rather than foreign agents (such as viruses and bacteria). Although the precise cause of SLE remains unknown despite much ongoing research, many different factors have been implicated. Genetic, or inherited factors are among the contributors to the onset of SLE. Although SLE and other autoimmune diseases (such as problems of the thyroid gland and autoimmune anemia) can run in families, the chance of passing SLE from parent to child is lower than 5 %. Usually the siblings (excluding identical twins) of an SLE patient are not affected. However, for an identical twin, the risk of getting SLE is greater.

The relatively low risk of SLE being passed down through families of SLE patients can be explained by the fact that many different genes are involved : each gene contributes individually to the risk of developing SLE, but each is not enough on its own to induce the disease. In other words, if you have SLE, it is unlikely that your child will develop it. If your child has SLE but you do not, you should not blame yourself, and it is unlikely that a sibling will develop the disease. The genetics of SLE is an area of intense research, and much more information will undoubtedly be gained in the near future."

Good luck in your search for information. I think knowledge is essential in dealing with illnesses, but don't let it take over your mind ;) I know I've been there and have been guilty of that myself.

Here are a few links off the top of my head:
i think this medline tutorial is an amazing resource
medline article
arthritis canada
an active online lupus support group -- not official info in many cases...but a great source of support and people to answer personal questions

Becca's_Mommy March 29th, 2008 04:22 PM

I don't know very much about Lupas but my suggestion would to be to find the "official" Lupas research site and see what they say.

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