Lupus
- Thread starter rh71
- Start date
My sister has it, and lives a pretty normal life. Although she limits her time in the sun, and has some rough mornings, she adapts to it pretty well. Was initially unhappy, but is much better after the adjustment...
Aren't there two kinds of lupus? One is more topical...or external and less damaging than an internal (of the body) type?
my aunt (now passed away) had it...she had the systemic variety and it was very degenerative, especially as she got older (after 50 or so). it affects different people differently, so you cant just give out a textbook list of symptoms - for her it was muscular degeneration and her salivary glands didnt work.
Anubis
No Lifer
my grandmother had it
when she was diagnosed she was like 35 docs said she had 5 years to live. she lived to be almost 80. it made her tired ans she had a cold alot
when she was diagnosed she was like 35 docs said she had 5 years to live. she lived to be almost 80. it made her tired ans she had a cold alot
my mom's friend and one of my aunts both have it.
its not life threatening i dont believe, my aunt has been diagnosed for several years.
she has to go at things a little easier.
my mom's friend has had it for at least 20 years.
she gets by. its my understanding is its essentially HIV, it wears down your immune system to a point where you can get really sick and then cause death.
its not life threatening i dont believe, my aunt has been diagnosed for several years.
she has to go at things a little easier.
my mom's friend has had it for at least 20 years.
she gets by. its my understanding is its essentially HIV, it wears down your immune system to a point where you can get really sick and then cause death.
I knew someone with lupus. Keyword in that sentence being: knew.
I consider it among the highest of sensless deaths where a person's own immune system would turn against them.
The good news is that for many sufferers, the condition is more of a major nuisance than life-threatening.
My friend Tanitha was diagnosed at 12 or 13. She had it about as bad as you can get. She did her best to make sure no one knew about her condition, but in truth by age 22, she had already had multiple heart attacks and renal failure and was on dialysis 3 times a week. She tried to live a normal life, and did a surprisingly good job of it, being a good student, a talented journalist and photographer, and an accomplished musician.
I met Tanitha because she was the stage manager for a play I was in. The next play I did after that, she helped with sound. She brought her best friend along to work on stage crew. Her best friend is now my fiancee.
A couple months later, she was stage manager for another show I was in, and my then-gf worked stage crew again. We all had a great time.
The show closed on a Saturday. We didn't know it, but T had gone in for her dialysis Sat morning and learned that her shunt was clogged and that her treatment would have to wait until Tuesday when a technician could clean the shunt out.
On Tuesday morning she went in and while they were working she said she felt faint and her heart was beating fast. They admitted her into the hospital and she soon went into cardiac arrest. They managed to get her heart beating again, but she was comatose and lacking a lot of basic reflexes. The doctors were not optimistic, but they said they wait 48 hours before they start to think about pulling the plug.
Two days later, Tanitha miraculously woke up and was her spunky self, throwing people out of the room, trying to chew through her ventilator tube, trying to get out of bed. That was a thursday. She improved steadily through Saturday, but she was having problems that the doctors believed to be related to internal bleeding. She was to be transported by ambulance to UPenn, her "home" hospital and one with more resources than the small community hospital she was at.
She didn't even make it out of the driveway.
The doctors managed to get her going again, but she was comatose again, but showed even less signs of life than before. Sunday afternoon, they flew her to UPenn.
Monday night we were greeted by a neurologist who said there was no hope and he just wanted to pull the plug. We fought with him to give us 24 hours so that people could say goodbye.
Throughout the night, friends drifted in and out, a small core group staying the night. We never saw that bastard neurologist again.
Around 7:30, after consulting with T's mother, the nurse shut down the IV drips and Tanitha finally went on her way.
She was just shy of 23 years old, and just shy of her college graduation.
Perhaps the worst part is that she was trying to regain her strength for a kidney transplant from her mother. The anti-rejection medication would have silenced the lupus flare-ups.
Recently, experimental tests began to treat lupus with medications based on anti-rejection drugs. This could soon be a revolution for those living with lupus.
In September, on T's 23rd birthday, a group of friends staged a musical benefit in her honor and were able to raise some $5000 for the Lupus Fund. We plan to make this an annual event, and we also hope to create a scholarship fund in her memory to be awarded to budding journalism students.
That's my lupus-related story.
But the good news is Tanitha had it worst than most people
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Sorry about your friend Jzero. I never realized Lupus could get so serious since I've only read that it can be controllable with meds. I also read about the recent headway made with experimentation - so that's another good sign. Regardless, it's sad that people have to live many years of their life in such pain. It simply isn't fair.
My wife has a form of it (sjogrens), her sisters have it, her Father has it, and her Brother has been diagnosed with RA (which is in the same family of diseases). Oh yeah.....this is NOT a genetic disorder
I don't have time to go into it (leaving for dinner) but I can try to give more info later).
SDC
I don't have time to go into it (leaving for dinner) but I can try to give more info later).
SDC
My highschool friend Katie had it... she was tired and weak a lot of the time, but otherwise lived a happy, normal life.
My girlfriend (at the time) had it. She unfortunately died from complications of it (lupus pneumonitis) last year (Oct. 29, 2002). She was 23. I did a decent amount of research on it while she was in the hospital (about 2 weeks), so if you have particular questions, you can ask me.
I did a decent amount of research on it while she was in the hospital (about 2 weeks), so if you have particular questions, you can ask me.
Originally posted by: SupaDupaCheez
My wife has a form of it (sjogrens), her sisters have it, her Father has it, and her Brother has been diagnosed with RA (which is in the same family of diseases). Oh yeah.....this is NOT a genetic disorder
I don't have time to go into it (leaving for dinner) but I can try to give more info later).
SDC
Wow, two males in the family had it (or something similar). Lupus is VERY rare for males to get.
Lupus + Pregnancy is VERY serious. If someone is in remission from lupus and is pregnant, it's a very high likelihood that the individual will get the onset of lupus again during the end of the pregnancy (or right after she gives birth). Miscarriages are also very common. It's still feasible to have children, but it does require a lot of monitoring by physicians.
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