June Awareness Month


Please check back during the month of June for more information on the following awareness campaigns:



World Sickle Cell Day (6/19)

May Awareness: Amyotrophic Lateral Sclerosis

ALS pic

Image courtesy of Praisaeng at FreeDigitalPhotos.net

Amyotrophic Lateral Sclerosis

Also called: ALS, Lou Gehrig’s disease


Amyotrophic lateral sclerosis (ALS) is a nervous system disease that attacks nerve cells called neurons in your brain and spinal cord. These neurons transmit messages from your brain and spinal cord to your voluntary muscles – the ones you can control, like in your arms and legs. At first, this causes mild muscle problems. Some people notice

  • Trouble walking or running
  • Trouble writing
  • Speech problems

Eventually, you lose your strength and cannot move. When muscles in your chest fail, you cannot breathe. A breathing machine can help, but most people with ALS die from respiratory failure.

The disease usually strikes between age 40 and 60. More men than women get it. No one knows what causes ALS. It can run in families, but usually it strikes at random. There is no cure. Medicines can relieve symptoms and, sometimes, prolong survival.

Information provided by NIH: National Institute of Neurological Disorders and Stroke


For more information on ALS you can go to the ALS Association at www.alsa.org.

May Awareness: Mental Health

Mental Health

Image courtesy of Ambro at FreeDigitalPhotos.net

Mental Health


May is Mental Health Awareness Month.  Mental illness has no boundaries or limitations.  It can affect any gender, race, age or socioeconomic status. End the stigma of mental illness and educate yourself on what it means.  Mental illness can be any of the conditions mentioned below:


  • ADHD
  • Anxiety Disorders
  • Autism
  • Bipolar Disorder
  • Borderline Personality Disorder
  • Depression
  • Dissociative Disorders
  • Eating Disorders
  • Obsessive-Compulsive Disorder
  • Posttraumatic Stress Disorder
  • Schizoaffective Disorder
  • Schizophrenia

Related Conditions:

  • Anosognosia
  • Dual Diagnosis
  • Psychosis
  • Self-harm
  • Sleep Disorders
  • Suicide

For more information on Mental Health go to the National Alliance on Mental Illness at www.nami.org.

May Awareness: Sturge-Weber Syndrome


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Struge-Weber Syndrome

Sturge-Weber syndrome is a neurological disorder indicated at birth by a port-wine stain birthmark on the forehead and upper eyelid of one side of the face.  The birthmark can vary in color from light pink to deep purple and is caused by an overabundance of capillaries around the trigeminal nerve just beneath the surface of the face.  Sturge-Weber syndrome is also accompanied by abnormal blood vessels on the brain surface and the loss of nerve cells and calcification of underlying tissue in the cerebral cortex of the brain on the same side of the brain as the birthmark.

Treatment for Sturge-Weber syndrome is symptomatic.  Laser treatment may be used to lighten or remove the birthmark.   Anticonvulsant medications may be used to control seizures.

Although it is possible for the birthmark and atrophy in the cerebral cortex to be present without symptoms, most infants will develop convulsive seizures during their first year of life.  There is a greater likelihood of intellectual impairment when seizures start before the age of 2 and are resistant to treatment.  Prognosis is worst in the minority of children who have both sides of the brain affected by the blood vessel abnormalities.

Information provided by:  NIH: National Institute of Neurological Disorders and Stroke

For more information on Sturge-Weber syndrome you can go to The Sturge-Weber Foundation at www.sturge-weber.org.

May Awareness: Complex Regional Pain Syndrome


Image courtesy of stockimages at FreeDigitalPhotos.net

Complex Regional Pain Syndrome

Also called: Causalgia, CRPS, Reflex sympathetic dystrophy


Complex regional pain syndrome (CRPS) is a chronic pain condition. It causes intense pain, usually in the arms, hands, legs, or feet. It may happen after an injury, either to a nerve or to tissue in the affected area. Rest and time may only make it worse.

Symptoms in the affected area are

  • Dramatic changes in skin temperature, color, or texture
  • Intense burning pain
  • Extreme skin sensitivity
  • Swelling and stiffness in affected joints
  • Decreased ability to move the affected body part

The cause of CRPS is unknown. There is no specific diagnostic test. Your doctor will diagnose CRPS based on your signs and symptoms.

There is no cure. It can get worse over time, and may spread to other parts of the body. Occasionally it goes away, either temporarily or for good. Treatment focuses on relieving the pain, and can include medicines, physical therapy, and nerve blocks.

Information provided by:  NIH: National Institute of Neurological Disorders and Stroke


For more information on CRPS go to The American RSDHope Organization at


May Awareness: Neurofibromatosis


Image courtesy of vitasamb2001 at FreeDigitalPhotos.net


Neurofibromatosis is a genetic disorder of the nervous system. It mainly affects how nerve cells form and grow. It causes tumors to grow on nerves. You can get neurofibromatosis from your parents, or it can happen because of a mutation (change) in your genes. Once you have it, you can pass it along to your children. Usually the tumors are benign, but sometimes they can become cancerous.

There are three types of neurofibromatosis:

  • Type 1 (NF1) causes skin changes and deformed bones. It usually starts in childhood. Sometimes the symptoms are present at birth.
  • Type 2 (NF2) causes hearing loss, ringing in the ears, and poor balance. Symptoms often start in the teen years.
  • Schwannomatosis causes intense pain. It is the rarest type.

Doctors diagnose the different types based on the symptoms. Genetic testing is also used to diagnose NF1 and NF2. There is no cure. Treatment can help control symptoms. Depending on the type of disease and how serious it is, treatment may include surgery to remove tumors, radiation therapy, and medicines.

Information provided by NIH: National Institute of Neurological Disorders and Stroke


For more information on Neurofibromatosis go to the Children’s Tumor Foundation website at www.ctf.org.


May Awareness: Lupus


Image courtesy of stockimages at FreeDigitalPhotos.net

Information about Lupus

What is Lupus?

Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin.  The immune system normally protects the body against viruses, bacteria, and other foreign materials.  In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue.  The immune system then makes antibodies directed against “self.”

What are the symptoms of lupus?

Symptoms of lupus often mimic  other less serious illnesses.  They can range from mild to life threatening.  Other common symptoms include:  achy joints, frequent fevers of more than 100 degrees Fahrenheit, arthritis, prolonged or extreme fatigue, skin rashes and anemia.

Who gets lupus?

The Lupus Foundation of America estimates that approximately 1.4 million Americans have a form of the disease.

It develops most often between the ages 15 and 44 and is two-to-three times more common among African Americans, Hispanics, Asians and Native Americans.

What causes lupus?

Researchers do not know what causes lupus.  Environmental factors play a role in triggering the disease.  Some of the triggers include infections, antibiotics, ultraviolet light, extreme stress, certain drugs and hormones.

How is lupus diagnosed?

Diagnosis is usually made by a careful review of a person’s entire medical history and a physical examination, coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

How is lupus treated? 

Treatment approaches are based on the specific needs and symptoms of each person.  Commonly prescribed medications include:  nonsteroidal anti-flammatory drugs (NSAIDS), acetaminophen, corticosteroids, antimalarials, and immunomodulating drugs.

With current methods of therapy 80-90 percent of people with lupus can look forward to a normal lifespan.

For more information on lupus you can go to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) website:   http://www.niams.nih.gov

Information provided by U.S. Department of Health & Human Services www.hhs.gov

May Awareness: Celiac Disease

wheat field

Image courtesy of adamr at FreeDigitalPhotos.net

Wheat And Gluten Intolerance: An Introduction To Celiac Disease


Written by Scott White

Celiac disease, or celiac sprue, officially known as “gluten intolerant enteropathy” is a genetic auto-immune disorder, this means that a gene carries a physical trait, and that trait can be passed down from one family member to another.
“Auto-immune” describes the way that the disease does damage; “auto” means “to oneself” so it is saying that the immune system of a celiac mistakenly does damage to the celiac rather than to the supposed invader. What happens is that the immune system believes that a portion of the food eaten needs to be attacked, and as a side-effect of the attack, the lining of the small intestine gets damaged.

It appears as though the gene for celiac disease may ride on the same gene as diabetes, and like diabetes, you can carry the gene but not have the disease. It takes some “triggering event” to start up the process (little is known about this mechanism, but suspected “events” include physical or emotional stress, pregnancy, over-exposure to wheat, other diseases, and even antibiotics); and, of course, the celiac must be exposed to wheat in the first place.

Dermatitis herpetiformis (DH) is another form of celiac disease. Anyone who has DH is a celiac. In this form of the disease, lesions that look like a herpes sore appear on the skin, usually in very symmetrical ways: on the hands, arms, head, elbows, knees, buttocks, etc. They are often extremely itchy. (Please note that the name of this disease is misleading, it has absolutely nothing to do with herpes.

A very common wheat allergy happens when your body sees wheat as an invader and attacks it. Symptoms of a wheat allergy could be eczema (different from dermatitis herpetiformis), sneezing, increased acne, or if you have a very serious allergy to wheat, you might have an anaphylactic reaction in which your throat can swell up to the point where you can no longer breath. However, these are not typical symptoms of celiac disease.

The main effect of celiac disease is the damage that is done to the small intestine; if you have symptoms that are caused by damage to the small intestine (for example, flattened villi as seen in a biopsy, or any form of malnutrition that is caused by the damaged villi) then what you have is not a wheat allergy, but rather celiac disease.

Traditionally, experts have seen very few people with a simple “wheat allergy”, and many more with celiac disease, so many experts predict that celiac disease is more common than wheat allergies. If you have problems with wheat, you should visit with a gastroenterologist and get tested for celiac disease.

Unfortunately, at this time, there is no cure, and no hope for a cure any time soon. Once the disease has been triggered there is no way to turn it off, though in the far future there might be hope for gene therapies or other mechanisms which might work; none of these are likely in the near future. However, while there is no actual cure, a gluten-free diet solves most of the problems associated with the disease.

“Gluten-free” is another slight misnomer, since it’s probable that “gluten” isn’t the problem, and it certainly isn’t the whole problem, however this term has come to represent the celiac diet and so we define what we eat, or what we don’t eat, by this term. A gluten-free diet just means strict avoidance of wheat, rye, barley and oats, even in the tiniest of amounts. This is more easily said than done, but once one becomes familiar with the diet it becomes routine.

According to experts, celiac disease is known as “The Great Mimic” because patients who ultimately end up diagnosed with the disease come to the doctor’s office with such a wide variety of symptoms that it can be very hard to diagnose. What this means is that there is no typical set of symptoms. There is a classic set of symptoms (diarrhea, thinness, malnutrition, pot belly) that is associated with the disease, but classic is not the same as typical. People with celiac disease who are not following a gluten-free diet may have just one symptom (maybe just anemia, or feeling run down, or behavioral problems) or they may have several.
That said, here is a list of possible symptoms which can include short term symptoms such as: diarrhea, constipation, steatorrhea (fatty stools that float rather than sink), abdominal pain, excessive gas, fuzzy-mindedness after gluten ingestion, burning sensations in the throat, irritability, inability to concentrate, pale, malodorous, bulky stools, frequent, foamy diarrhea, and an itchy rash (in dermatitis herpetiformis).

Longer term symptoms can include: any problem associated with vitamin deficiencies such as; iron deficiency (anemia), chronic fatigue, weakness, weight loss, bone pain, easily fractured bones, abnormal or impaired skin sensation (paresthesia), including burning, prickling, itching or tingling, and edema, as well as, white flecks on the fingernails, failure to thrive (in infants and children), paleness, wasted buttocks, pot belly with or without painful bloating, and persistent itchy rashes (in dermatitis herpetiformis).

Celiacs who are not following a gluten-free diet will suffer from damage to the lining of their small intestines (specifically, to the “villi” the little hair-like growth that helps process food in the small intestine). This damage slows and even prevents the digestion of food, which can lead to malnutrition (anemia, osteoporosis, vitamin deficiencies, and more).

Over the long term, the constant damage to the small intestine can cause enough wear to lead to intestinal cancers. In the short run, many annoying symptoms can also make life downright uncomfortable. Following a gluten-free diet reduces the risk of cancer down to that of the general population, and will improve digestion enough to sustain the body normally, as well as getting rid of the usual short-term side effects.

The primary indicator test for celiac disease involves three biopsies (one before going on a gluten-free diet, showing damage to the villi; one during a gluten-free diet, showing healed villi; one after going back to eating gluten, again showing damage), but many knowledgeable physicians now accept one biopsy, an antibody blood test, and improvement of symptoms while on a gluten-free diet (the biopsy showing damage to the villi prior to a gluten-free diet; the antibody test showing elevated antibodies to gluten while still eating a gluten-filled diet). A less formal diagnostic process would just involve the blood tests, and improvement on a gluten-free diet.

It should be noted that the blood tests look for elevated IgA antibodies as an immune response to gluten, but a fair percentage of people with celiac disease are IgA deficient, and so their tests would give a false negative. There is another test now being manufactured (Tissue Transglutaminase Testing or tTG) which looks at IgG antibodies, instead of IgA antibodies, that is proving very reliable for diagnosing celiac disease.

Although the disease itself has been around for quite some time, it gets the name “sprue” from the similarity of symptoms to “tropical sprue” which is an older known disease, the cause of the disease was not recognized until the middle of this century, when war-time limited supplies of wheat to local populations, and a physician noticed after the war, that several of his “sprue” patients who had improved during the war, were now ill again. It was not long before he realized that wheat was the culprit.

From that point, continued investigation added rye, barley, and oats to the list of grains that made celiac sprue patients sick. Still, for quite a while it was thought of as a childhood disease that would be outgrown, so it was not that long ago that the medical community recognized that adults suffered from the disease as well. Until very recently, it was thought of as a “rare” disease in the United States, and most medical practitioners are still unaware of the growing evidence that celiac disease is actually quite common


Book Review: Roar Like A Lion

Roar Like A LionImage courtesy of Elyse Bruce


Roar Like A Lion is a chapter book written for all ages.  The story introduces the reader to Missy Barrett who has autism.  She takes a trip to the zoo with her older cousin Alana and opens up about a problem she is having at school.

The book discusses the challenges that people with autism have to face.  Throughout the story Missy talks about her love of animals and how she thinks animals could have autism but don’t have to struggle with being bullied.

This book is a great story to teach children the challenges of autism and how bullying affects people.

Roar Like A Lion was written by Elyse Bruce who has also written Missy Barrett Adventures, Missy Barrett Conversations and Missy Barrett Year in Review.  For more information about Elyse Bruce’s books please go to www.missybarrett.wordpress.com.


*I received a free copy of the book to review. There was no compensation.  The opinions expressed are my own and not influenced in any way.

Book Review: A Manual for Marco

A Manual for Marco

 Image courtesy of Loving Healing Press


A Manual for Marco is a wonderful story of an eight-year-old girl who decides to create a list of special and not-so-special qualities about her brother who has autism spectrum disorder.

This book does an amazing job of explaining through the eyes of a younger sister how autism affects her life.  It explains specific ways to cope with the challenges of autism and how others can learn about the disorder too.

I would highly recommend A Manual for Marco.  It is a well-illustrated book and sends a good message to children about how people with autism have special qualities in their own unique way and are still an important part of the family.

My son has many of the characteristics that are described in this book and I know this will help my youngest son understand why his older brother has so many challenges.  This book is a must read for anyone that has children with siblings.  It is written in the voice of a child and can help siblings and friends understand why some things can be so difficult for someone with autism.

A Manual for Marco was written and illustrated by award-winning author and designer Shaila Abdullah.  Additional artwork by 12-year-old artist Iman Trejpar is included in the book.

For more information on all of Shaila Abdullah’s books please visit www.ShailaAbdullah.com.