Lupus Awareness Month

Last week, I wrote about Celiac Awareness Month for May. May is also Lupus Awareness Month. Lupus is a chronic autoimmune disease that can damage any part of the body. Inflammation and damaged can occur in the skins, joints, organs, literally the entire body is under attack. It is a disease of flares and remissions. It is an immune system in overdrive. Lupus is a disease which is more pervasive and severe than people think. An estimated 1.5 million Americans are living with lupus today with more than 16,000 new cases every year. Lupus has touched my life as my cousin-in-law suffered with lupus until her death in 2013. Recently, I learned that another dear cousin-in-law has been diagnosed as well. When I learned that May is Lupus Awareness Month, I had to take the time to educate myself and hopefully others as an estimated two-thirds of people know little or nothing about lupus. Together, we can fight this disease and support those who must live with this horrible disease.

Lupus is known as the Great Imitator as symptoms closely resembles other diseases and can come and go over time, making diagnosis difficult. On average, an individual will be diagnosed within six years from the onset of symptoms. While an exact cause is unknown, scientists believe that lupus is triggered by a combination of genetics, hormones and environmental facts. Ninety percent of lupus patients are women who commonly developed symptoms between the ages of 15 and 44, although lupus can occur in children as young as infants. Lupus is NOT a form of arthritis and it is NOT contagious. Lupus affects all races and ethnicities. Although, African-Americans, Hispanics/Latinos, Asians, Pacific Islanders and Native Americans are two-three times more likely to be diagnosed than Caucasians. The difficulty in lupus is that no two cases are alike and the symptoms can vary greatly among patients. Symptoms may develop suddenly or slowly, be mild or severe, or can be temporary or permanent. Most lupus patients will experience symptoms in flare-ups and can have periods of remissions with no symptoms at all. The most common sign and symptoms are:

Fatigue and fever

Joint pain, stiffness and welling

Butterfly shaped rash on the face across the bridge of the nose and cheeks

Photosensitivity (resulting in skin lesions and rashes, fever, debilitating fatigue, and joint pain)

Raynaud’s phenomenon (fingers and toes turn white or blue when exposed to cold or during stressful periods)

Shortness of breath, chest pain

Dry eyes

Headaches, confusion and memory loss

Due to the attack on the body, lupus can lead to various complications throughout the body. Patients can develop kidney complications often characterized by generalized itching, chest pain, nausea, vomiting and edema. Lupus can affect the brain and the central nervous system characterized with headaches, dizziness, behavior changes, hallucinations, strokes and seizures. Patients can experience memory problems and difficult expressing their thoughts. Patients can also suffer from anemia, increased risk of bleeding and blood clots, and vasculitis, the inflammation of the blood vessels). Patients are susceptible to pleurisy, inflammation of the chest cavity, and pneumonia. Lupus patients are also at greatest risk for pericarditis, inflammation of heart muscle, and cardiovascular disease and heart attacks. Patients are also at greater risk for urinary tract infections, yeast infections, salmonella, herpes and shingles. There is also an increased risk for cancer. Patients can develop avascular necrosis or bone tissue death. This is caused by loss of blood supply to the bone. Tiny breaks in the bone occur until eventual bone collapse. The hip joint is the most affected and can lead to the patient needed assistance for mobility. Lupus also poses complications of preeclampsia and preterm birth in pregnancy.

Reading the list of symptoms and possible complications is scary and heartbreaking that millions of people are suffering with these conditions. Treatments have advanced which help patients control their symptoms and even achieve long periods of remission and increase the longevity of their lives. Lupus patients can expect to live a normal lifespan. On average, lupus patients will have eight prescriptions to manage the symptoms. In 2013, the FDA finally approved the first drug designed to specifically treat lupus. Due to lupus causing the body’s immunity to go into overdrive, immunosuppressant drugs such as cyclophosphamide, a chemotherapy drug, has been shown to help alleviate symptoms. NSAIDs such as ibuprofen and naproxen, have been useful treatments. Antimalarial drugs also have been shown to help with symptoms. Corticosteroids are a common course of treatment. There are also a variety of home remedies and alternative medicines which can help as well. With the help of various treatments, many lupus patients still lead full and active lives while for others it is debilitating and greatly affects their daily lives.

In recent years, more and more famous faces have been coming forward with their own stories of lupus. I’ve complied just a few to show that lupus doesn’t have to stop life as you know it. Flannery O’Connor was diagnosed with systematic lupus erythematosus in 1951. She was told by doctors that she only had five years to live. She went on to live additional fourteen years. She died in 1964 after completing more than two dozen short stories and two novels while battling lupus. More current faces of lupus include Nick Cannon who was diagnosed with lupus nephritis (inflammation of the kidneys). Selena Gomez, Paula Abdul, Toni Braxton, and Seal all have shared their stories and continue to advocate lupus research and education as well as continue their careers and enjoy their favorite activities.

Lupus is a debilitating disease which can affect everyday activities. Many people have heard of lupus but do not know what the disease can do. During this awareness month, I want to get the word out about this silent demon which wreaks havoc on an individual’s body. I hope this post brings some understand about this horrible disease. And may it also bring awareness to someone who may not have the disease and not realize it. I’ve included websites below which you can go to for further information.

For more information:

Lupus Awareness Month www.lupusawarenessmonth.org

Lupus Foundation of America www.lupus.org

Mayo Clinic http://www.mayoclinic.org/diseases-conditions/lupus/basics/definition/con-20019676

Celiac Awareness Month

May is Celiac Awareness Month. It astonishes me how much people still do not understand celiac sprue disease and other gluten intolerance. Some still think that gluten free diets are a fad but to those who suffer from a gluten allergy, the explosion of gluten free food is a sigh of relief. There are more than 200,000 cases of celiac cases in the US per year. I’ve been on the gluten free diet for about 10 years and it’s been a struggle. So before you roll your eyes at someone who requests a gluten free menu or asks for the ingredients, educate yourself about the importance of a gluten free diet for those who need it.

Celiac sprue disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye. The body creates inflammation that damages the small intestine. The villi, the fingerlike projections in the small intestine, which aid in absorption of nutrients are attacked by the body when gluten is present. The reaction leads to atrophy of the villi which leads to malabsorption. The classic symptoms are diarrhea with other symptoms of bloating, gas, fatigue, anemia, nausea, vomiting and decreased or increased appetite. Sufferers can also experience a wide range of pain in the abdomen, bones and joints. The pain can be a sharp, stabbing pain or a constant ache. I can tell when I’ve had gluten because my wrists will aches and I will get sharp pains in the middle of my forearms. Other conditions which are related to celiac and gluten intolerance is cramping, itching, lactose intolerance, skin rash, unexplained weight loss or even weight gain.

The cause of celiac and other gluten intolerance is unknown and it can develop at any point in life from infancy to adulthood. It is most common in Caucasians or those with European ancestry. Celiac will affect more women than men. People with celiac disease or gluten intolerance may also have other autoimmune disorders such as systemic lupus erythematosus, Sjogren’s syndrome, and Addison’s disease. Gluten intolerance has also been found in people with Down syndrome, intestinal cancers, thyroid disease and as mentioned before, lactose intolerance. I find the link to lactose intolerance interesting as I was lactose intolerance throughout childhood and adolescence. I would break out in skin rashes and have upset stomach whenever I had too much milk. After going gluten free, I noticed that I could tolerate larger and larger amounts of milk. While I still watch how much milk I consume, I don’t have the same reactions as I did when I was younger.

Gluten intolerance is very difficult diagnosis. A blood test is usually done first. If a positive test comes back, then an upper endoscopy is performed. A biopsy of tissue from the villi of the duodenum is taken. Misdiagnosis will occur or in my case, be inconclusive. My doctor said that if I felt better on the gluten free diet, then I most likely had an intolerance. So while I do not have an official diagnosis, I do have it on my medical records that I am gluten free. And I do feel better. The symptoms of an intolerance can go beyond the digestive system. Easy bruising can be seen in sufferers, or in my case, a bruise which has never really gone away. Depression and anxiety are common. In children, a failure to thrive is common as well as fussiness, tooth defects and delayed puberty.

The only treatment for celiac and gluten intolerance is a gluten free diet. A gluten free diet will relieve the symptoms and may lead to healing of the small intestine. So stay away from anything made from wheat, barely, and rye. Sounds easily right? Wrong! Gluten can be found in everything! Breads, cookies, cakes, and other foods that have obvious gluten ingredients. However, there are some that aren’t so obvious. For instance, soy sauce and some package seasonings. Beer is off limits. Some barbeque sauces have malted barley as an ingredient. Some candy is off limits too. Milky Way, Whoppers, and Werther’s Original caramels are just a few which may not seem to have gluten but they do. Checking ingredient lists at the grocery store becomes second nature and eating out can be a night mare. Not following the diet can put a person at risk for other autoimmune diseases, bone disease, certain types of intestinal cancers, anemia and infertility or repeated miscarriage.

In conclusion, the gluten free diet isn’t a fad. It may have started that way with people thinking it was a healthier way to eat. However, the people who have benefited a great deal from the rise in the availability of gluten free food are those who desperately need it. I can finally have decent pasta dishes with my family. I can have a hamburger without treating it like a steak. I can bake cookies and cakes for birthdays. Remember before you make a remark or get annoyed at the person asking for the ingredient lists, you don’t know how dangerous it can be for an individual if gluten is in the food they eat. Please treat gluten free individuals will the same respect as you would for people with more noticeable food allergies like strawberries or peanuts.

For further information:

Celiac Disease Foundation www.celiac.org

Mayo Clinic http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics/definition/con-20030410

Celiac Support Association www.csaceliacs.org