Lupus Statistics By Race

 

There is an estimated 1.5 million Americans affected by Lupus. Black women are three times more likely than Caucasian women to get lupus and may develop more severe symptoms. Studies show that as many as 1 in every 250 black women are affected with Lupus.

Lupus is also two times more prevalent in Asian-American and Hispanic women in comparison to Caucasian women. It should also be noted that Native American women are disproportionately affected as well.

The well-known ‘Lupus in Minorities: Nature Versus Nurture (LUMINA) study’ tracked death, damage, disability, and disease activity.

The researchers have published numerous papers reporting findings on the relative contribution of genetic factors on the course and outcome of Lupus in Latinos, African-Americans, and Caucasians.

LUMINA findings include:

  • African-Americans and Hispanic women with Lupus tend to develop the disease earlier in life. We also experience greater disease activity such as kidney and cardiovascular problems.
  • Latinas had a poorer prognosis overall than Caucasian women. They were more likely to have kidney damage, and also showed a more rapid rate of kidney failure.
  • African-Americans were also found to have a higher frequency of neurological problems such as seizures, hemorrhage, and stroke, whereas Latinas were found to experience a higher level of cardiac disease.

Overall, we have more complications than Caucasian patients. This fact, primarily, was a driving force for me to start Melanin and Lupus. I believe strongly in spreading awareness of the impact Lupus has on the minority community in order to minimize our mortality rate.

A less extensive study in New York City during the period from 1955 to 1964 showed annual lupus mortality of 5.5 and 15.4 per million for Caucasian and African‐American women, respectively. Such mortality risk difference continued in the subsequent 5‐year period (Caucasian women 5.2 per million and African‐American women 14.8 per million per year).

In my personal opinion, this could be due in part to socioeconomic factors. Minority groups have reportedly less access to sufficient health care and, therefore, may prevent an early diagnosis. Minority groups have more frequent instances of hospitalization due to Lupus flare ups and are generally only treated for the symptoms.

By simply treating the symptoms without a proper Lupus diagnosis, the organ involvement can be quite widespread.  This often results in higher rates of re-hospitalization and many times a diagnosis is received far too late. This is just unacceptable. We must arm ourselves with knowledge in the fight against Lupus.

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Life Threatening Complications of Lupus

Historically, in the 1950’s, most people with Lupus lived fewer than five years.

Due to the development of modern Lupus treatments, most people with Lupus can expect to live a normal life span. Some Lupus patients may go on to live a very near normal life span.

However, there are some Lupus warriors that may experience life threatening complications of Lupus. Most commonly, death in Lupus patients is caused by organ failure.

CARDIOVASCULAR DISEASE or HEART ATTACK

The leading cause of death by organ failure is from cardiovascular disease. This can be attributed to accelerated atherosclerosis. In order to prevent cardiovascular disease in Lupus patients, it is imperative to either prevent or treat aggressively any cases of high blood pressure or high cholesterol.

Steroids treatments are a common defense for Lupus. In patients with elevated blood pressure and/or cholesterol, steroids should not be given to patients for extended use. Also, the dosage given should be the lowest possible.

KIDNEY DISEASE

Similarly, it is very common for Lupus to negatively impact the kidneys. When this occurs, it is referred to as Lupus nephritis. When the tiny filters in the kidneys are damaged, it results in the loss of kidney function. This commonly results in fluid retention therefore resulting in inflammation and weight gain.

If lupus nephritis is not treated, it may result in permanent kidney damage which can lead to end stage renal disease or kidney failure. In  this case, a Lupus patient, will need dialysis to clean the blood.

If kidney failure progresses slowly, your doctor should consider a preemptive kidney transplant before dialysis becomes your only option. Transplantation can prolong life and subsequently improve your overall quality of life.

PREGNANCY COMPLICATIONS

As I discussed previously in my personal story,  Lupus (SLE) can increase your risk of dangerous pregnancy complications. These complications may include stillbirth, miscarriage, pre-eclampsia, premature delivery, and occasionally an ectopic pregnancy (which can be, in and of itself, life threatening to the pregnant mother.)

It is imperative to have pregnancies closely monitored by your doctor. Your specialist and OB/GYN should monitor your progress and detect any complications early.

If at all possible, pregnancies in Lupus patients should be planned ahead in order to avoid getting pregnant during a Lupus flare. If your flare symptoms are particularly severe, most doctors would advise against getting pregnant until the flare symptoms have subsided. This would lessen the chances of pregnancy complications mentioned above.

 

 

 

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Is Lupus Contagious?

One of the most common questions I get would be, “Is Lupus contagious?”

The simple answer. No. Lupus is not contagious and can not be transmitted from person to person through any means.

However, many genetic predispositions and gene environment interactions have been shown to predispose certain people to develop this awful and unpredictable autoimmune disease.

No need to worry. You won’t catch it from someone. And if you already have it, you won’t infect those around you.

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How Do I Avoid a Lupus Flare Up?

If you have been wondering how to stop or avoid a Lupus flare up, I’ve got some great tips for you.

  • Avoid direct sunlight whenever possible. Stay indoors during the day when the sun is hottest. (10 a.m-3 p.m)  If you must go outside, be sure to wear protective gear such as wide brim hats, visors, light colored clothing, and really dope sunglasses.

 

 

  •  Avoid stress. Physical and mental stress are major Lupus triggers. So stay calm…and avoid stress. In other words, stay away from people and situations that will piss you off.

 

 

  •   Exercise. This one can be difficult for some who experience shortness of breath and/or  joint pain and inflammation. But do your best to find activities to keep you active.

 

 

  • Get plenty of rest. Many people may experience sleep problems, but you have to try hard to shut your overactive mind down and get some beauty sleep.

 

 

  • Take your medications as prescribed. Set an alarm or if you need a reminder to take your meds on time. If your meds are causing side effects that are too difficult to handle, be sure to consult your doctor for alternatives.

 

 

  •  Avoid foods that cause inflammation. Things like dairy, sugar, grain fed meats, and bad fats are very likely to cause inflammation in your body. Stay away from them.

Follow the tips above and your body will surely thank you for it.

Melanin And Lupus - Blog Directory OnToplist.com“>Melanin And Lupus - Blog Directory OnToplist.com

 

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Foods That Fight Lupus Inflammation

The following foods have been proven to reduce inflammation due to Lupus:

  • Green leafy vegetables like kale, spinach, callalloo, collards
  • Fatty fish containing omega 3s like salmon, tuna, mackerel, eel, butterfish, carp, and sardines
  • Fruits like strawberries, apples, grapes, and blueberries
  • Coconut oil and olive oil
  • Healthy nuts like almonds, walnuts, and cashews
  • Tomatoes
Kick Lupus’ Ass With Food
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Famous Faces of Lupus

In America, about 1.5 million people have lupus. Even though Lupus is found more often in women of color during childbearing age, Lupus can affect people of any race, gender, and age.

Below you will find 10 famous people of color diagnosed with Lupus:

1. Michael Jackson

2. Toni Braxton

3. Selena Gomez

4. Nick Cannon

5. Seal

6. Tim Raines

7. Cori Broadus (Daughter of Snoop Dogg)

8. Yuko Goto

9. Trick Daddy

10. J. Dilla

 

 

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Lupus Symptoms

 

Lupus is often called the “great imitator” since it so closely mimics or is mistaken for many other illnesses. Getting diagnosed with Lupus usually takes longer than it should.

Below is a list of common Lupus symptoms. Symptoms vary from person to person depending upon disease activity and severity of flare-ups.

If you are experiencing one or more of the following symptoms and have yet to be diagnosed, it may be helpful to mention Lupus to your medical care giver. Ask him/her to run the necessary blood tests to rule out autoimmune diseases.

Initially, some common, yet chronic symptoms include:

  • Fatigue
  • Low Grade Fever
  • Joint Pain
  • Muscle Pain

Since these common symptoms occur in many illnesses, a patient can not be diagnosed with Lupus simply for having these symptoms. However, these symptoms are highly suggestive when they occur together and mentioning these symptoms to your doctor may help point them in the right direction.

The additional signs and symptoms below can be more indicative of Lupus but still require laboratory testing for an accurate diagnosis.

  • Skin Rash (including a butterfly shaped rash that is usually seen on the cheeks and bridge of the nose)
  • Joint Pain
  • Anemia
  • Lung Problems
  • Heart Problems
  • Kidney Problems
  • Headaches
  • Mood Disorders
  • Anxiety
  • Depression (including suicidal thoughts)
  • Reproductive Problems (miscarriage)
  • Poor Sleep Quality
  • Sun Sensitivity

Again, having these symptoms do not mean you have Lupus. However, these symptoms should prompt your doctor to order ANA blood tests to get the ball rolling in your proper diagnosis.

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My Story

 

PART ONE

So let’s start with a little bit of background information. To understand where I am right now in my Lupus journey, you must first understand where I started.

Before I begin, I want to point out the devastating fact that people of color are three times more likely to develop Lupus in their lifetime. We are also more likely to endure a more aggressive level of Lupus symptoms and flare-ups. I have my own theories on that little fact but we will touch on that at another time.

Lupus tends to run rampant in the bodies of people of African, Chinese, and Caribbean descent at an alarmingly higher rate than Caucasians.

On that note, let me give you a bit of my genetic makeup. My mother was an even mix of both Chinese and Jamaican. On appearance, she leaned more towards the Chinese side of her family but was born and raised in Kingston, Jamaica.

My father was a full blown West African from Nigeria. So based on the previously mentioned statistics, I’m pretty much screwed. Or at least, so it seems on paper.

I was born and raised in the Gun Hill section of the Bronx, New York along with many other West Indian families that migrated to New York in the seventies.

At the age of 12, my mother died and I went to live in Nigerian with my father. At the time, my father was recently retired from his post as two – term Nigerian Ambassador to the United Nations.

I lived in Lagos, Nigeria for the next three years while also attending boarding school in Ogun State. During my time there, I contracted malaria several times despite the stupid immunizations they give you prior to leaving the U.S. (to supposedly protect you from that horribly fatal disease.)

The doctors in Nigeria were shocked I lived through so much suffering with malaria. I was told children die from malaria with less severity than I had experienced.

I can still recall one of my father’s doctors telling me that if I didn’t die from malaria, I would still never be the same again. He warned me of the reality of having a compromised immune system and I would have to take special care of myself if I wanted to live longer than my mother (who died from a heart attack at the age of 42.)

Of course, like most teenagers, I paid him no mind. I was just fortunate enough to live through yet another bout of malaria and my only concern at the time was figuring out how to return back to America.

Long story short, I came back to America 3 years later at the age of 15 and tried desperately to forget about all the near death malaria experiences.

Five years after my return, at the age of 20, I gave birth to a beautiful baby girl after some complications that could have taken her life.

I was young and naive and I was just happy to call this amazing bundle of joy my own. I had found love in the purest form. I never thought twice about the complications during delivery because she survived. To me, that’s all that mattered.

When my daughter’s father went to prison for eight years (don’t ask. SMH), I struggled to support my daughter on my own and did okay for us despite minor disturbances with my health here and there. I just summed it up to the residual malaria in my system.

A few years later, I got pregnant again with different results this time. After about two and a half months, I started bleeding. I thought I was having a miscarriage as the bleeding grew heavier and heavier each day. Of course, I was told to go to a doctor. Over and over and over again. But, like I said before, I paid it no mind. I am pretty stubborn and truly hate dealing with doctors.

I was busy making moves and trying to get my life together with no regard for the fact that my life was in major jeopardy. But I didn’t know just how much at the time.

After five days of heavy bleeding, I was finally convinced to see a doctor. I went to a walk in urgent care center where I was quickly transported to  an Emergency room at a major hospital. There, I quickly learned after ultrasound and laparoscopy, that I did not have a miscarriage as I thought. Instead, I had an ectopic pregnancy. WTH?

I had no idea what an ectopic pregnancy was. The doctors explained that the fetus never made it to my uterus. Instead it made itself comfortable in my fallopian tube right up until it outgrew the tube and then burst.

I didn’t quite understand the gravity of the situation, but I could tell the doctors were really scared. So, I signed the permitting paperwork to allow emergency surgery and off to the operating room I went.

I woke up after surgery to find a bag of morphine attached to my IV and about three doctors asking me a slew of questions.

They wanted to know how I got to the emergency room in the first place. They also wanted to know the degree of pain I was in when I entered the hospital.

Truthfully, I experienced little to no pain from the onset of the bleeding until the day I went to the hospital. The doctors didn’t believe a word I said. They told me it was not humanly possible to live with a ruptured fallopian tube for days.

In my defense, I told them to feel free to ask those around me during the days leading up to my hospitalization.

Basically, they called me a medical miracle and asked me a ton more questions as I drifted off to sleep from the morphine.

In a nutshell, the doctors told me that I would have died if I had not had surgery within the hour the actual surgery started. That got my attention. I asked what would have caused this rare type of pregnancy and could not get a definitive answer.

My right tube was completely removed but they were able to leave the ovary on that side intact. I was told that it would be extremely difficult to get pregnant again, and that if I did, I would likely experience the same ordeal again.

PART TWO

Fast forward nine years later, I became pregnant again with a different outcome entirely. I saw a doctor early on to be sure the baby was actually in my uterus. The doctor confirmed and I was delighted. My husband and I, like most couples, prepared for the baby for months. I felt so blessed to be given another chance to have another baby with a man that adored me just as much as I did him.

Shortly before my sixth month, I had a strange feeling that something was not right. Due to complications in my very first pregnancy, I never went through the traditional “water break” moment. I had an emergency C-section and never really experienced real labor. So, I was basically a newbie all over again and was unsure what would be considered normal.

This time was different. I suspected that there may have been a slow leak of amniotic fluid so my husband rushed me to the hospital where my suspicion was confirmed. Immediately, the doctors did everything to prevent me from going into labor because it was just too early. They positioned my bed in an upside down position to reduce gravity and I stayed like that for over a week.

By day nine, I was definitely in labor. Long story a bit shorter, I gave birth to a son who weighed in at almost two pounds. The doctors placed him on my chest as I handled the afterbirth mess. Ewwww.

I realized fairly quickly that my son was not crying.

My baby boy was stillborn and I was devastated. Needless to say, it was a difficult time for my family and we did the best we could to heal.

I didn’t ever want to relive that kind of pain again so I attempted birth control methods. Everyone of them made me very sick. Apparently, the universe had different plans for me. Six months later, I was pregnant again.

There were difficult times during the pregnancy and I took every precaution I could to have a different outcome. I was determined to remain hopeful even when no one thought I should be. Despite all my fears and worries, I gave birth to another beautiful miracle via C-section at full term. Thank God.

My second and last little girl was born healthy and just as perfect as the first.

I couldn’t help but wonder why I had such experiences with my pregnancies. I always made it my business to maintain some sort of exercise regimen and I was careful with my food choices. At that time, I was very unfamiliar with Lupus. I had no knowledge of the negative effects it could have on a pregnancy nor the fact that it had already likely invaded my body.

Like many with Lupus, I had early symptoms of joint pain and inflammation from time to time accompanied by extreme fatigue. I could always hear that Nigerian doctor in the back of my mind telling me that I would not be “normal” ever again. Once again, I blamed it all on malaria.

A few years later, I landed what I thought was a pretty cool job in Midtown Manhattan. At the time, I worked overnight and the fatigue began to get much worse. I increased my caffeine intake to keep up with the demanding schedule and job duties. Like most women, I did what was necessary to perform my job well without complaint.

The work environment became more stressful to me than the hours worked. I was constantly bombarded with stressful situations that I handled the best way I knew how while still securing my income. During my time there, my health slowly started to decline.

I experienced episodes of severe carpal tunnel syndrome with excruciating pain in both my wrists, a hairline fracture in my right wrist from a workplace slip and fall, and later massive inflammation and pain in both knees.

Lupus was not even on my radar at that point. One of my long term friends at the time had a mother that suffered from Lupus so I knew a little, but not much about it. Because I worked overnight, I had minimal sun exposure. I had no skin rashes so my doctors never thought to even consider Lupus until the swelling in one of my knees got pretty severe.

The doctor was sure it must be inflamed due to fluid retention and attempted to aspirate it. What a waste. The doctor couldn’t retrieve any fluid at all. The doctor sent me for a battery of blood tests to rule out lyme disease and other autoimmune disorders. He said nothing was conclusive so he put me on an anti-inflammatory medicine called Meloxicam.

With continued use, it seemed to do the trick to minimize the swelling and pain. Within the year, I managed to strategize my exit plan from the previously mentioned stressful employment and embarked on a mission of entrepreneurship.

I opened an online retail store with much success. I began touring the Northeast area doing pop-up shops in and around the NYC area. My body started to really display a seemingly deep hatred for me. I started experiencing extreme shortness of breath even when at rest. My breathing started to become very labored just from talking. I then began to notice lumps in my breast as well as my neck. I had to take a break from the business to sort things out.

This time I knew I had to take things more seriously. Sometimes I wondered if my symptoms were related to just getting older. I never had the chance to watch my parents get older so I didn’t know what to expect. (My father suffered a heart attack and later died from a stroke shortly after I left Nigeria.)

A voice in my head kept saying, “You have to get yourself checked out.”

Being a new entrepreneur, I no longer had the insurance from my previous employer and my husband had to wait months before he was able to add me on to his insurance. So, I did what all uninsured people do in a health crisis. I went to the emergency room.

What a waste. While I was getting my blood pressure taken, I fainted in the triage nurse’s arms. Thank God my husband was there to help catch me before I completely flattened that poor little lady. Because of my family history of early heart attacks and current spiked blood pressure, EKGs and other blood tests were run. The ER doctor concluded that I was not having a heart attack but was able to see that I had first degree congenital heart block.

First degree congenital heart block sounds much scarier than it really is. However, the doctor neglected to inform me that I was born with it as a result of Neonatal Lupus. Neonatal Lupus is a rare condition found in newborn babies when they are infected with Lupus antibodies passed down from the mother in utero.

Any symptoms a baby may have with Neonatal Lupus are generally gone in about the first six months of life. That is, except for congenital heart block which can cause a slow heart beat. The most serious and potentially life threatening congenital heart block is the third degree heart block in which there is a complete blockage. In my case, I was fortunate to have first-degree heart block which is the mildest form of this condition.

PART THREE

It was safe to say that I knew it was time to do the one thing I didn’t want to do. I had to apply for Medicaid! I needed to keep regular doctor visits and stay out of the Emergency Rooms. Emergency rooms only provide emergency services. While some things feel like emergencies to us, they will usually only prevent you from dying. That’s it, folks. Really.

They will provide you with half-answers at best. I encourage you to only go to an ER if you have no other choice because you may leave there so frustrated, the stress may aggravate things even more.

In my case, since there was no way to explain the severity of my shortness of breath with the first degree congenital heart block diagnosis, I was desperate to build a relationship with a reputable doctor who would give me real answers.

While I waited for Medicaid to approve me, I found myself in and out of emergency rooms for the next several months with no real answers. I was simply treated for whatever symptoms presented at the time. Those symptoms included major abdominal pain, gastrointestinal difficulties, shortness of breath, high blood pressure, severe abdominal bloating, and later kidney pain.

When I was finally able to utilize my Medicaid, I saw a primary care doctor who thankfully decided to run just about every blood test imaginable.

Within days, I was diagnosed with enough to make any healthy person faint. First, I was told I had a positive ANA. I had no idea what that meant and my doctor didn’t go into great detail to explain either. I was also told I had a positive H. Pylori result.

My doctor actually gave me copies of my test results and hurried me out of the office and told me to always keep those results with me at all times wherever I went. Ok.  That was strange.

His staff took me across the street where there was another doctor who specialized in gastrointestinal issues. There, I was given prescriptions for lots of pills for the H. Pylori to be taken over the course of several weeks.

By the end of the day, I had appointments set for an Upper Endoscopy, Colonoscopy, Mammogram, Breast Ultrasound, Echo-Cardiogram, and CT scans for my lungs, stomach, kidneys, and back.

They suspected cancer. Cancer in the stomach, cancer in the lymph nodes (lymphoma), and also breast cancer. They started treating me different. Different how? Nice. Like I was dying quickly. I was a nervous wreck and began thinking the worst.

Wanna know the results? Well, here it is. I was diagnosed with Sjogrens Syndrome, SLE (more commonly known as Lupus), Scleroderma CREST, Polymyositis,  Pulmonary Hypertension, kidney nephritis, Raynaud’s Syndrome, Spinal Arthritis, Shatzki Ring, and Pre-diabetes.

I didn’t even know what to say. I was speechless, mostly because I didn’t know what the hell any of it really meant, but my doctor said life was about to get really interesting. Major understatement.

The crazy thing about it was that, visually, I was in the best shape of my life. I would later come to hear quite frequently, “But you look great, You don’t look sick at all.”

 

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Hello Lupus Warriors

Welcome to Melanin and Lupus.

Lupus, also called SLE, is an inflammatory autoimmune disease caused when a person’s immune system attacks its own healthy organs.

Presently, there is no cure. Therefore, we must focus on improving quality of life.

 

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