Find Support On Lupus Connect

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I just wanted to share some great new information with all my Lupus warriors out there. Did you guys know that The Lupus Foundation of America in partnership with Inspire, has launched LupusConnect™ ?  It’s an online Lupus community where individuals with Lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.

LupusConnect encourages its community members to ask questions, reply to posts and read about others’ experiences in a safe and comforting community.

It can be accessed directly at LupusConnect.Inspire.com or through the National Resource Center on Lupus.

Research shows that Lupus patients and other autoimmune warriors are looking for social support and assistance coping with their disease. Specifically, they are looking for a resource where they can connect online with other people like them.

Based on this input and conversations with constituents, the Lupus Foundation of America partnered with Inspire to leverage its social health network and build an online community that brings together people affected by Lupus to share their stories and learn from the experiences of other people impacted by this devastating and life-altering disease.

“No matter how isolated Lupus can make people feel, LupusConnect offers people the opportunity to express their fears, frustrations, and hopes with others who understand Lupus firsthand,” said Sandra C. Raymond, Lupus Foundation of America CEO. “We are excited to partner with Inspire and to continue our commitment to providing people impacted by lupus with access to high-quality resources and support services.”

As people living with Lupus, we know first hand the difficulties we face and the benefit of connecting with others who genuinely feel our pain. Check out Lupus Connect. It’s free and it just might change your day.

 

 

 

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The Impact of Lupus on the Entire Body

lupus affecting the body

The above image is simply a reminder that Lupus is much more than skin rashes and random pain. The effects of Lupus on the entire body is complicated and widespread. If you are experiencing symptoms related to those shown above, speak with your doctor to begin treatment before complications worsen.

 

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Treat Lupus Naturally With Cannabis

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For those of us with Lupus, we know how much chronic inflammation and pain can completely ruin your day. Very often we are treated by our doctors with prescribed medications that result in more symptoms and side effects.

Finding natural remedies with little to no side effects is a long standing goal for Lupus fighters. Treating Lupus naturally with the right foods is something we all try with varied results.

However, it has become increasingly popular for many to use cannabis products like CBD oil for autoimmune difficulties. Cannabis is widely recognized for its therapeutic relief of pain and inflammation. Therefore, it makes it an ideal solution for some Lupus fighters.

Personally speaking, I had not even thought of asking my doctors about medical marijuana. I had been on so many different medications with different side effects that I eventually just learned to accept a new normal.

After a while, I met a few people who spoke highly on the effects of cannabis in Lupus patients. As I learned more and more about medical marijuana, its benefits, and the medical marijuana program in my state, I decided to ask my doctor about it.

My doctor felt it would help my pain and insomnia in a natural way and he gave me the green light. I must say it was one of the best decisions I’ve made in a minute.

The grueling process to get a medical marijuana card in your state is annoying, but well worth it in the long run. I use cannabis twice a day which seems to make my life much closer to normal than ever.

I use it in the morning because I tend to wake up feeling pretty stiff and a little swollen. Cannabis or CBD oil for (SLE) Lupus does not have a negative unnatural effect on any of the prescription medications I take either.

I also use it at night a few hours before my desired bedtime so I am no longer watching overnight reruns of the news all night. Prior to using medical marijuana for my autoimmune conditions, I would be wide awake until around seven or eight a.m. before my eyes would eventually close.

For some, it may take some getting used to. You may need to try very low doses until you can assess your tolerance and comfort level. I can definitely say, without hesitation, Lupus can be naturally treated with Cannabis (CBD oil) and natural foods that reduce inflammation.

This is a conversation worth having with your doctor. It could change your life and take you back to the days of near normalcy.

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Pulmonary Arterial Hypertension

Pulmonary arterial hypertension is a life threatening condition that is very rare but often found in Lupus patients. This condition is a type of high blood pressure that affects the blood pressure in the lungs and the heart.

It’s the type of high blood pressure that occurs in the right side of your heart and in the arteries that supply the blood to your lungs. These arteries are called the pulmonary arteries and pulmonary arterial hypertension occurs when these arteries thicken or become hard and rigid. The thickening of the pulmonary arteries makes the blood flow more difficult.

Your heart has two upper chambers (atria) and two lower chambers (ventricles). Each time blood passes through your heart, the lower right chamber (right ventricle) pumps blood to your lungs through a large blood vessel (pulmonary artery).

In your lungs, the blood releases carbon dioxide and picks up oxygen. The oxygen-rich blood then flows through blood vessels in your lungs (pulmonary arteries, capillaries and veins) to the left side of your heart.

Normally, the blood flows easily through the vessels in your lungs, so blood pressure is usually much lower in your lungs.

With pulmonary hypertension, the rise in blood pressure is caused by changes in the cells that line your pulmonary arteries. These changes can cause the walls of the arteries to become stiff and thick, and extra tissue may form. The blood vessels may also become inflamed and tight.

These changes in the pulmonary arteries can reduce or block blood flow through the blood vessels. This makes it harder for blood to flow, raising the blood pressure in the pulmonary arteries.

As the pressure builds, your heart’s lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and fail.

Symptoms

The signs and symptoms of pulmonary hypertension in its early stages might not be noticeable for months or even years. As the disease progresses, symptoms become worse.

Pulmonary hypertension symptoms include:

  • Shortness of breath (dyspnea), initially while exercising and eventually while at rest
  • Fatigue
  • Dizziness or fainting spells (syncope)
  • Chest pressure or pain
  • Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites)
  • Racing pulse or heart palpitations

Risk factors

  • You’re overweight
  • You have a family history of the disease
  • You have one of various conditions that can increase your risk of developing pulmonary hypertension
  • You use illegal drugs, such as cocaine
  • You take certain appetite-suppressant medications
  • You have an existing risk of developing pulmonary hypertension, such as a family history of the condition, and you live at a high altitude

Treatment

Pulmonary hypertension can not be cured but doctors can help you manage your condition. Treatment may help improve your symptoms and slow the progress of pulmonary hypertension.

It often takes some time to find the most appropriate treatment for pulmonary hypertension. The treatments are often complex and require extensive follow-up care.

Although pulmonary arterial hypertension can affect anyone, patients with Lupus are at an increased risk of developing the condition. 

This life threatening condition must be taken seriously. If you suspect you or someone you know may be suffering from pulmonary arterial hypertension, speak with your doctor as soon as possible.

 

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It’s The Weekend 

Hey Lupus warriors. The weekend is here. Enjoy your weekend responsibly. If you are heading outside,  be sure to pack any medications you’ll be needing while you’re out.

Friendly reminder: don’t forget your sun protection gear … i.e. hats, sunglasses, light colored clothing. Stay hydrated and stay away from refined sugars and/or fried fast foods.

If you can, try to find activities that limit your sun exposure. If at all possible, head outside in the late afternoon / early evening. If not, and you need to be out early, stay in shaded areas whenever possible. Whatever you decide to do, enjoy yourselves. If you want to get outside the house but avoid excess sun, jump in your car (hopefully with tinted windows) and head over to your favorite mall for some air conditioned retail therapy. Enjoy.

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The Relation Between Melanin And Lupus

In humans, melanin is the primary determinant of skin color.

The melanin in the skin is produced by melanocytes, which are found in the basal layer of the epidermis. Generally, humans possess a similar concentration of melanocytes in their skin. However, the melanocytes in people of color produce variable amounts of melanin.

Some humans have very little or no melanin synthesis in their bodies, a condition known as albinism.

Exposure to sunlight stimulates the skin to produce vitamin D. Because high levels of cutaneous melanin act as a natural sun screen, dark skin can be a risk factor for vitamin D deficiency.

Vitamin D exerts a wide range of influences on immune functions. Low levels of vitamin D are associated with autoimmune diseases, especially lupus.

Vitamin D has been in the news lately for its positive impact on everything from Lupus to cardiovascular disorders.

The major biologic function of Vitamin D is to maintain normal blood levels of calcium and phosphorus. Vitamin D aids in the absorption of calcium, helping to form and maintain strong bones.

It is used, alone or in combination with calcium, to increase bone mineral density and decrease fractures. Recently, research also suggests that vitamin D may provide protection from osteoporosis, cardiovascular disorders, hypertension (high blood pressure), cancer, and Lupus.

It is important to know that it is possible to take too much Vitamin D. People often need to take large amounts of Vitamin D to reach the recommended levels in the blood. Some people may take a prescription strength dose of Vitamin D as high as 50,000 IU once a week. (This high dosage MUST be prescribed by a physician.)

Others use 2,000 to 3,000 IU of Vitamin D over the counter and do not take prescription doses of Vitamin D. Vitamin D levels in the blood should generally be between 30 and 100 nanograms per milliliter. But, between 20 and 30 nanograms per milliliter is considered an intermediate level according to the Endocrine Society clinical practice guidelines.

Vitamin D is a fat soluble vitamin so it sticks around for a longer time than water soluble vitamins, like Vitamin C which helps explain how you can take too much of it.   If your Vitamin D level is quite low, or doesn’t respond to 2,000 to 3,000 units of Vitamin D over the counter, a prescription for the higher dose is usually recommended.

In any case, it is wise to have the Vitamin D level in the blood checked periodically to make sure your levels are in an appropriate range.

For all my Lupus warriors with an abundance of melanin, it is crucial to have your Vitamin D levels checked. The fact that we have to avoid the sun further limits our Vitamin D absorption. Be sure to speak with your healthcare provider to assess your current Vitamin D levels. He/she will be able to prescribe a sufficient amount of this crucial vitamin to help reduce Lupus flares.

Be strong. Be fearless.

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Summertime With Lupus

Anytime spent battling Lupus is a major challenge for most of us. However, summertime with Lupus has proven to be especially complicated in comparison to the remainder of the year.

Needless to say, the sun is especially hot in the summer. Photosensitivity is an extreme sensitivity to ultraviolet (UV) rays from the sun and other light sources. This is especially common in people with Lupus and a few other autoimmune diseases.

Photosensitivity is a major symptom of Lupus. It can cause skin rashes, fever, fatigue, joint pain, and other symptoms that make summertime unbearable for many Lupus warriors.

The link between the sun and lupus flare-ups is thought to be a set of inflammatory protein molecules called cytokines, which are activated when ultraviolet light hits the skin. The skin inflammation that results can create a chain reaction of other symptoms.

Personally, I have experienced major Lupus flares in the summer. I have an extreme sensitivity to sunlight in my eyes which makes it impossible to look directly in the direction of the sun.

I also get bad skin rashes on my face over the nose and cheeks. The white Vitiligo patches of skin on my legs spread more quickly in the summer as well. The exposure to the sun also trigger flu type symptoms that include extreme fatigue, low grade fever, and painful joints all over.

In conclusion, do your best to avoid the sun at all costs. These symptoms will undoubtedly occur during other times of the year but will generally worsen in the summer. The effects of Lupus flares in the summer will last far longer than the joys of outdoor summer activities.

Doctors say a UVA and UVB sunscreen is just one component of a multi-prong approach to limit the extent of Lupus symptoms while outdoors. Other strategies include sun-protection clothing, applying a sun-protection coating to car windows and staying indoors from 10 a.m. to 3 p.m whenever possible.

 

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Different Types Of Lupus

Generally this blog has posted about SLE Lupus and its signs and symptoms. However, there are four different types of Lupus. 

Systemic Lupus Erythematosus

Systemic lupus is the most common form of lupus—it’s what we have referred to in the past as simply “Lupus.” Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems in the body include:

  • Inflammation of the kidneys—called lupus nephritis—can affect the body’s ability to filter waste from the blood. It can be so damaging that dialysis or kidney transplant may be needed.
  • Inflammation of the nervous system and brain can cause memory problems, confusion, headaches, and strokes.
  • Inflammation in the brain’s blood vessels can cause high fevers, seizures, and behavioral changes.
  • Hardening of the arteries or coronary artery disease—the buildup of deposits on coronary artery walls—can lead to a heart attack.

Cutaneous Lupus Erythematosus

This type of Lupus is most often limited to the skin. Although cutaneous lupus can cause many types of rashes and lesions or sores, the most common—called discoid rash—is raised, scaly and red, but not itchy. Areas of rash appear like disks, or circles.

Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus

Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but it rarely affects major organs.

The drugs most commonly connected with drug-induced lupus include:

  • Hydralazine—Treatment for high blood pressure or hypertension
  • Procainamide—Treatment for irregular heart rhythms
  • Isoniazid—Treatment for tuberculosis

Drug-induced lupus is more common in men because they take these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. Lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus

Neonatal lupus is not a true form of lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth.

Most infants of mothers with lupus are entirely healthy.

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Lupus And The Heart

There’s no easy way to say it. Lupus raises your chances of heart disease and stroke. The most common heart problem in people with Lupus is inflammation in the sac around the heart. This can cause shortness of breath and sharp chest pains.

Sometimes steroids used as lupus treatments may increase this risk. Lupus complications are sometimes treated with powerful inflammation-fighters and medicines that calm down the immune system, such as corticosteroids like prednisone.

It is very important to note that taking corticosteroids for a long time can worsen heart health.  Doctors may want to lower the dose at times to avoid this serious complication.

Black women with Lupus and other autoimmune diseases need to pay extra attention to their heart health. Not only is heart disease the number one killer of all black women, but the death rate from heart disease is much higher in women of color. Black women are also three times more likely than white women to have Lupus—which in itself raises the risk for heart damage.

Coronary artery disease is common among Lupus patients in particular. More than a third of people with Lupus are at risk for this complication. Inflammation and various immune system abnormalities cause the coronary arteries to rapidly harden, narrow, and clog. This is called atherosclerosis. In time, clots can form or bits of plaque can break off from artery linings, interfering with blood flow to the heart and brain.

Less common causes of coronary artery problems in people with Lupus include inflammation of the artery walls, spasms of the arteries, and blood clots. Female Lupus patients are 50 times more likely than their peers to have chest pain or a heart attack.

Ladies, time to treat your heart with LOVE.

  1. Eat healthy. To keep your weight, blood pressure, and cholesterol under control, fill up on fruits, veggies, and whole grains. Eat baked or broiled fatty fish like salmon at least twice a week. It’s rich in heart-healthy omega-3 oil. Major key…Avoid fast foods and fried foods at all costs. If you can’t, try harder. But if you must eat them, keep it down to a minimum or choose the healthiest options available.
  2. Avoid smoking. If you are a smoker you really have no choice but to quit ASAP. I know it seems easier said than done, but you have no choice if you want to live. I smoked for almost 20 years and found it difficult to quit myself. I tried and failed several times until I got sick and realized how much tobacco was adding to the destruction of my body.
  3. Get regular exercise. Activities that are easy on your joints are crucial for Lupus patients. Yoga, swimming, pilates, are great ways to keep your heart and lungs strong with low impact on damaged joints.

Additionally, it is imperative to keep regular doctor visits as well as keeping your doctor informed of any unexpected changes such as shortness of breath and chest pain before these things escalate.

With effective communication and shared information, we are in a better position to arm ourselves for the Lupus and heart battle that many are not fortunate enough to avoid.

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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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