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TOPIC TITLE: Systemic Lupus
Created On 11/25/05 11:27 AM
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lifesaver1
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11/25/05 11:27 AM
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I have systemic lupus and have been experiencing an increase in the number of flare ups with an increasing severity of all symptoms. I'm wondering if anyone else has experienced this and if so is there any relief in sight.


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To know what is right is Ruach HaKodesh, To know what is wrong and remain yet silent transforms simple cowardice into great obscenity. -R'n Faige Teitlebaum-
 
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chana85
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2/16/06 2:37 PM
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bs'd

Hello!!
I'm Chana and i have been diagnosed with kidney lupus about a month ago. I think it's similar to system lupus - it affects the organs; in my case the kidneys are the ones which are severly attained.
I'm 20 yrs old and have had to stop my studies. I live in Belgium, have been to seminary last yr in Israel and lived 2 yrs before that in Brooklyn, NY. When visiting my sister over winterbreaj i was taken the day before our flight back w/ Hatzala to the emergency room. They did some tests but we took responsability to leave coz we had a flight the next day.
Right when coming back we got into emergency here. I was in the hospital for 2 weeks - I got 2x endoxan and in march i'll be getting the 3rd one. I take steroids too which have been reduced since this morning to 40mg. I take tons of medication and for all those of course other ones for the side-effects. By the 3rd dose of endoxan they'll decide if i'll need another 3 months or not. At the moment im having it hard. My mother is very much in contact with the organisations in Belgium - but there's no such thing as a supportgroup for lupus patients, for sure not a jewish one. This is why my mom got very excited about this website where Jewish ppl can be in touch and support each other.

I hope we can be in touch about our disease. I'm sorry if i elaborated about the medication!
Have a Shabbat Shalom u'Mevorach!!!
Kol Tuv!
Chana.
 
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lifesaver1
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3/1/06 6:57 PM
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Shalom Aleycham Chana;
I should really introduce myself..my name is Myriam Kohan.

A sheynem dank for responding to my question about lupus.
I also have a serious amount of kidney involvement and am going through the
medication guessing game now. It's a little complicated here though as I refuse
to let my doctor admit me to hospital without being able to maintain my standards
of kashruth and here in Nova Scotia Canada where the Jewish community is very small and the frum community miniscule there is no hospital that provides kosher food.
I have been told there is some sort of support group here for people with lupus but for sure
there is nothing jewish.
If you would like to reply to my email it is bat_orr@yahoo.com and also at
myriamkohan@ns.sympatico.ca

Zey Gezhunt un sthark
Myriam


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To know what is right is Ruach HaKodesh, To know what is wrong and remain yet silent transforms simple cowardice into great obscenity. -R'n Faige Teitlebaum-

Edited: 2/4/07 at 1:15 AM by lifesaver1
 
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rinx
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9/12/06 10:53 AM
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my mom has lupus... It's so good to hear that other people in the world have it! It's very scary...Now she's B"H in remission, and on tons of pills, but two summers ago she had hepatitis, she was all yellow, but she got better with pigeons-ever heard of that remedy? and the lupus also attacked her pancreas... she gave me a booklet to read all about lupus and it basically said that nobody bcan cure it and the scientists don't know much about it...refuah shlaima to all you!
 
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