Lupus today.I thought the current newsletter should be aimed towards family and friends of us with
lupus.The symptoms and severity of this disease vary so wildly that a lot of family,
friends, and even people you work with can't fully understand it.We'll start with the different forms of lupus, the simple symptoms, and who it generally effects.The most common form of lupus, found in mainly women (90% of those who are diagnosed are
women in their child baring years) is called SLE, systemic lupus erythematosus.If you have lupus, your immune system attacks healthy cells and tissues by mistake.This can damage your joints, skin, blood vessels and organs.Discoid lupus causes a rash that doesn't go away.Subacute cutaneous lupus causes sores
after being out in the sun. Another type can be caused by medication (very rare).Neonatal lupus,
which is rare, affects newborns.Some people can live with this disease an entire lifetime, with few side effects.. such
as some fatigue, joint pain, headaches..
Then again there are some that have life threatening lupus, the SLE form of lupus can effect
your blood, lungs.. (making it difficult to breathe, and some have to be on oxygen.) the most
common organ involvement is called Lupus nephritis.. it's inflamation in the kidney, and
can potentionally cause kidney failure. It can also cause joint pain and problems.. another
large organ involvement problem is.. lupus with CNS involvement.. it takes over your brain, causing
seizures, tremors, memory lapses, lack of short-term memory, psychosis, nueropathy problems,
and sometimes strokes.Generally with severe cases of SLE, secondary lupus conditions pop up... for instance:
Rheumatoid Arthtritis.- inflammatory autoimmune disorder that causes the immune system to attack
the joints.Fibromyalgia- A disorder that causes widespread chronic pain.Raynaud's disease - a vascular disorder that affects blood flow to the extremities which include
the fingers, toes, nose and ears when exposed to temperature changes or stress.Sjögren's syndrome - is an autoimmune disorder in which immune cells attack and destroy
the exocrine glands that produce tears and saliva.Chronic Fatigue - Everyone with SLE experiences chronic fatigue, sometimes it's so bad
we'll sleep for days, and when we have slept for days.. it's as if we never slept at all.And that's just a drop in the bucket. The other major problem with lupus, is getting diagnosed.Because, the symptoms vary so widely between person to person, a lot of doctors don't see
a need to test for lupus. Some people, me included have gone over 10 years without being diagnosed.Some of the common misconceptions of lupus are:
It's contagious or hereditary. - It isn't.That it's a form of cancer - It isn't, it's a systemic auto immune disease.That everyone with the disease is fine, and able to go on with their normal life, or everyone with
the disease will die. - Although both of these can happen, it totally depends on the INDIVIDUAL person.Everyone is effected differently, some people can go about their daily life with light flares that
are more of a pain than anything, and then there of some of us, who have major organ involvement
such as problems with our central nervous system, lung problems, or kidney nephritis.. which can
possibly cause death, or a debilitating lifestyle.How lupus is treated:
Since the disease is so complex there is currently no one medication that can help lupus, so the
medications that are given are ones to help lighten symptoms.Such as:
NSAIDs - Non steroid anti-inflamitory drugs, like ibuprophen, and exedrin.Steroids - Most commonly used is prednisone. (Which almost causes more side effects than it's worth.)
Anti-malarial medications - Most commonly used is plaquenil.immunosuppresant drugs (mores less oral chemo) - Such as Imuran, cytoxan, cell-cept.Also IV chemo is used as a last resort.From my experience and talking to others with lupus, getting diagnosed with this disease can be horrible,
or a relief.. some people go years without having a clue what is wrong with them, feeling actual pain and
having horrendous symptoms, but have been treated as if they were insane.It's important that friends and family of those with lupus are supportive, and don't add to the stress
of the person, which can possibly trigger flares, or make current flares worse.Not to mention it's hard
enough living with a disease that could possibly be fatal, without those around second guessing your disease..
which brings me to another topic.Lupus an invisible disease - Lupus, along with dozens of other illnesses are considered what have been named
as invisible diseases. An invisible disease is one that you can't visibly see.Unless you have discoid lupus
(lupus that attacks the skin) or hair loss from either lupus, or chemo.. people generally haven't a clue you're
sick.. people with lupus often hear things like... "Oh you look pretty today, you must be feeling better." When
the truth is.. makeup does wonders.Most of us refuse to lay down and let the disease take over our bodies, and
our sanity.. so even if we're extremely tired, in pain, and want to do nothing but cry.. we get up, get dressed, do
what we have to do for that day.. and keep going.Just because you can't see how tired we are, or how much pain we're
in.. doesn't mean we aren't sick. There will be times where flares are so bad that we can't get out of bed.. or we
have to be in the hospital.. but when we aren't in the hospital or in bed, that doesn't mean the disease has gone away.Lupus never goes away, and there is no cure.. it can sometimes be sent into remission for even years.. but unfortunately
that doesn't even happen to half the people with have been diagnosed with lupus.I don't think I can say it enough, but people need to spread the word and awareness of lupus! It has gotten a tiny
bit more recognition lately (Most likely from shows such as House.) than it has in the past 40 years.. but people
still haven't the slightest clue about it. Another problem is, we have no famous spokesperson for lupus.Which leaves
us to spread awareness, and help raise money for research and hopefully one day a cure.So please, for every future and present mother, father, brother, sister, aunt, uncle, son, daughter,
and best friend that battle with this disease let's help find a cure.There are a few ways you can donate, and help spread awareness..
One is, participate in your local lupus walk, most states have one around early summer.Another is, making donations, or raising money for the lupus foundation..
Or you could buy and wear bracelets, and shirts etc.. that will help spread the awareness,10 things not to say to someone with lupus:1.) Must be nice to sleep all day.2.) You're lucky you don't have to work.3.) I can relate.4.) Just take something.5.) Just try harder.6.) Just be positive.7.) You just want attention.8.) It's all in your head.9.) It could be worse.10.) But you LOOK good.href="http://www.layouts2u.com" target="_blank"Myspace Layouts !
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