does anyone else have someone who passed on due to this ?
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RE: lupus
My mum has systemic lupus, it's awful because she went form being active and fit to completely immobile and dependant on others, proper soul destroying
RE: lupus
my mums was SLE lupus thankfully she didnt know she could die from it . my mum never complained about how much pain she was in and she was more worried about if she be at work on time than the fact she was gasping for breath . she had her works uniform on the day she died , she collapsed in doctors surgery and despite their great efforts they managed to ressuciate her but she died in ambulance . it is truely awful as you just dont know how things will be xx
RE: lupus
Hi, In april 2002 i was suffering headaches and felt my face going numb i went straight to my doctors the doc looked me over and sent for an ambulance. I was put through the cat scan it was found i had had a bleed to my brain a slight stroke was diagnosed, i was admitted. The doc said i was young for this to happen(42)They ran a load of tests whilst i was in, on my release i had 2 attend a follow up appointment the same week this is where for the first time the words LUPUS was mentioned, they had been running tests on me and needed 2 do so for the next few months, i had 2 attend hospital as an outpatient 3 times a week, bloods taken untill July this is when i was diagnosed with systemic lupus, id never heard of it b4. Its the cells in your blood that invade your body and your body is working overtime rejecting them. Yes it does effect your everyday life, i can no longer do half the things i use to do i can no longer do my own decorating, simple house chores that i use to whip through daily have become a task. your body hurts your muscles hurt, your joints hurt, you are wide open to infections and our immune system is very low making any infection difficult to fight, your sleep is affected. You cant be around people/children who have measles..chicken pox..flu due to our immune system being so low, we just simply cant fight the infection like those who dont have it can. With the right medications and support you dont have to die from this terrible illness.
love to you all... Monica
RE: lupus
HI IM SIOBHAN AND MY DAD HAD LUPUS IN THE 70'S BUT WAS NOT DIAGNOSED FOR A NUMBER OF YEARS HOWEVER HE HAD HIS USES AND WAS POKED AND PRODDED FOR YEARS IN THE NAME OF RESEARCH AT THE MATER HOSPITAL DUBLIN. HE DIED IN 1982. ON XMAS EVE 2003 I WAS DIAGNOSED WITH IT TOO REMARKABLE AS ITS NOT HEREDITARY AND HAVE RAYNAUDS AND SJORGANS SYNDRUM NO SURPRISES THERE AS THEY ARE OFTEN INTERLINKED. HAVING LIVED THROUGH DADS SUFFERING IT DOES NOT SCARE ME AS RESEARCH HAS COME SUCH A LONG WAY SINCE THEN, ILL BE 50 ON SATURDAY AND TO LOOK AT ME NO ONE WOULD EVER SUSPECT THAT I HAD ANY ILLNESS AT ALL. OBVIOUSLY WHEN IM ILL I STAY IN BUT I GET TIRED SO EASILY I COULD SLEEP ON A WASHING LINE MY POOR HUSBAND TAKES THE BRUNT OF IT WHEN IM BAD BLESS HIM HE IS AN ANGEL. GENERALLY I HAVE A VERY UPBEAT AND POSITIVE OUTLOOK ON LIFE THESE DAYS PEOPLE LIVE WITH LUPUS QUITE WELL. SIOBHAN
RE: lupus
Hi Clair,
I lost my older sister 3 weeks ago to lupus. She started with the disease at about 5 years ago and was diagnosed in 2005. Although she had many chronic/ frequent symptoms and we knew she needed a kidney transplant because of the nephritis lupus was causing (and one of my sisters would be the kidney donor, the surgery was schenduled for next may), she looked so really fine, going to college and working everyday, with a great faith and a great sense of humour. We thought she would live for the surgery and be free from hemodialysis. Her death was so quick, in one week she turned so sick and died on Saturday night. It was a real shock, I knew few things about lupus when she was diagnosed, but never expected her to died of it.
RE: lupus
Karen I cried so hard to read your post here, my beautiful cousin, rest in peace, princess, may God give you peace xxx
RE: lupus
Hi Clair,my daughter kelly was 22yrs old when she passed away.Kelly had been diagnosed with lupus(SLE)for just 6wks.This was 2yrs ago,we still haven't had an inquest!We are fighting for truth about what happened during her final three days in hospital.They gave us at least two different death certificates and didnt tell us information when we questioned them.My daughter was my first child,im angry about her needless death.I just want the truth.Something has got to be done,if my fight will help,i'll do it.
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