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Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Wednesday, June 1, 2011

May is Lupus Awareness Month

As I've probably mentioned, May is EDS Awareness Month.  I also want to recognize that May is an awareness month for problems other than just EDS.  All of the awareness campaigns listed are in the USA unless otherwise noted.  A few of the other awareness campaigns are for: stroke, lupus, MS (in Canada), Huntington's Disease (in Canada), Osteoporosis (in the UK), Cystic Fibrosis (in the UK), Melanoma/Skin Cancer, Arthristis, Better Sleep, Mental Health, Asthma and Allergy, High Blood Pressure, Better Hearing and Speech, Cancer Research, Correct Posture, Neurofibromatosis, Hepatitis, and Lyme Disease.  I've decided that that in honor of my spoonie lupie friends, I will do a blog on Lupus for Lupus Awareness Month.  Of course I celebrated May 12th with a lot of fibromyalgia and ME/CFS awareness and education, because that day was fibromyalgia and ME/CFS awareness day.  :-)


Lupus is an auto-immune disease, which means the body's own defenses start attacking itself.  You may be more familiar with another auto-immune disease, Hashimoto's Thyroiditis, a form of hypothyroidism.  After a person develops one auto-immune disease, they are at-risk for other ones.  Examples of other auto-immune diseases include: Rheumatoid Arthritis (RA)Sjögren's syndromePolymyalgia RheumaticaGuillain-Barre syndromeSclerodermaType 1 Diabetes Mellitus, Grave's Disease (a form of hyperthyroidism), Celiac DiseaseMultiple sclerosis (MS), and Addison's Disease.


Lupus can be deadly.  When the body attacks it's own's tissue and organs, it causes inflammation.  There are four types of lupus systemic lupus erythematosu s (SLE), discoid lupus erythematosus (DLE), drug-induced lupus erythematosus (DIL), and neonatal lupus.  Women get lupus more than men and while there are treatments for lupus, there is no cure.  The SLE type is the what most people are referring to when they just say "Lupus."


In SLE the kidneys can be affected and can ultimately put the patient on dialysis.  The blood pressure in the lungs, which are often affected, are also increased.  This is called pulmonary hypertension.  The nervous system and brain can actually become inflamed with SLE.  This causes memory loss, confusion, headaches, and strokes.  Pain and severe fatigue are also part of SLE.  SLE patients also experience hardening of the arteries, also called coronary artery disease.  This can lead to heart attacks.  The blood vessels in the brain can also become inflamed, causing fevers, seizures, and behavioral changes.  The famous lupus "butterfly rash"  is a rash across both cheeks and over the bridge of the nose commonly seen in those with lupus.  In the SLE type people get mouth sores, anxiety, shortness of breath, alopecia (hair loss), Reynaud's phenomenon, dry eyes, and fever.  






DLE is a chronic skin condition of sores and inflammation that leave scars behind.  These lesions are red, scaling, crusty,and inflamed.  The rim may be darker than normal and the middle may be lighter in color.  DLE has three types: localized, generalized, and the childhood type.  The lesions usually appear on the scalp, bridge of nose, cheeks, lower lip, and ears.  The lesions can also appear in the mouth, nose, or vagina.  Ten percent of people with DLE will develop SLE, but most likely the person had SLE already and the skin inflammation was the first symptom to show.  The lupus "butterfly rash" can also occur with DLE.  The childhood form of DLE often turns into SLE when the child reaches adulthood.  A famous person with this condition is the singer Seal.


DIL is similar to SLE, but it is caused by a medication and will disappear once that medication is stopped.  There are 38 known medications that cause DIL.  The rate at which the body metabolizes the medication can predispose someone to getting DIL if they are on one of these medications: 


High Risk:
Procainamide (antiarrhythmic), Hydralazine (antihypertensive) 
Moderate to low risk: Isoniazid (antibiotic), Minocycline (antibiotic), Pyrazinamide (antibiotic), Quinidine (antiarrhythmic), D-Penicillamine (anti-inflammatory), Carbamazepine (anticonvulsant), Oxcarbazepine (anticonvulsant), Phenytoin (anticonvulsant), Propafenone (antiarrhythmic)
DIL causes muscle pain and joint swelling, flu like symptoms, fever, serositis (fluid build up around the heart), and abnormal test results.  After stopping the medication relief should start within three days and disappear within one to two weeks.


Neonatal lupus erythematosus happens to a baby born to a mother with the SLE type of lupus.  It is associated with the Ro/SSA antibody carried by the mother.  Neonatal lupus is a rare condition.  The baby with neonatal lupus develps has a rash, resembling DLE, and sometimes with systemic abnormalities such as heart block or hepatosplenomegaly.  They also have liver problems, or low blood cell counts.  They are born with no skin lesions and it isn't until a few weeks after birth that they appear.  This type of lupus is usually benign and self-limited.  It goes away after several months.  If a pregnant woman with lupus tests as at-risk, doctors can treat the baby before or at birth.  Most babies born to mothers with lupus are healthy.


You know how Dr. House says it's never lupus?  That's because lupus is known as one of the "great imitators" for it's ability to appear as another illness, when really lupus was the problem all along.  So when Dr. House says it's never lupus, he's wrong.  Lupus is more common that I realized, too.  If you suspect that you may have lupus, go to the Lupus Foundation of America's Could I have Lupus? checklist.  I also recommend their page on The Impact of Lupus on the Body.  These are both about the SLE type of lupus.


Lupus is also more common in blacks, Hispanics, Native Americans, and Asians.  It is usually diagnosed between the ages of 15 and 40.  Lupus is present in 1 out of every 250 black women and 1 out of 1,000 white women.  The treatments for Lupus often make the patient sick.  Better treatments and a cure for Lupus will hopefully be discovered soon.

1 comment:

  1. My aunt passed cause of complications of SLE and im writing a speech about how to make people more aware. Do you have an ideas that may work for raising awareness about Lupus?

    ReplyDelete

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