Sunday ended National Invisible Chronic Illness Awareness Week. I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to this website . I have read all the blogs posted (70) as of this writing. What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.
I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses. The stories were not much different from mine. Some illnesses I was familiar with or had heard of but didn’t know much about. Other illnesses I had never heard of before which sent me on a quick Google search.
In honor of all those whose stories I have read over this past week, I wanted to share what I learned, and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.
I am going to attempt to list all those illness that I read about here today.
Budd Chiari Syndrome (I didn’t know about this ) - a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.
Chronic Fatigue Syndrome see ME
Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.
Cuada Equina Syndrome (CES) - (One of so many illness that I was unaware of) - this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord.
Cystinosis (another illness I was unaware of) - a rare genetic disorder that causes an accumulation of cystine, an amino acid, within cells. This causes crystals to form and build up damaging cells. The crystals can affect many systems in the body especially the kidneys and eyes.
Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.
Diabetes (something most people know about but it makes sense that it would be an invisible illness)
Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) -This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls heart rate, blood pressure, digestive tract, and sweating among others. Some with dysautonomia are affected mildly while others can be left bed-ridden.
Ehler’s Danlos Syndrome (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.
Endometriosis (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) - cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.
Environmental Illness/Chemical Sensitivity (This describes me) - a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.
Fibromyalgia (I have this but not nearly as severe as others I know) - a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues. It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.
Food Allergies (I have this as well) - An allergy to many foods. Reactions can vary from rashes and hives to anaphylaxis.
Glycogen Storage Disease or GSD (something I was not aware of) - An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.
Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.
Lupus Systemic lupus erythematosus (SLE) - an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.
Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick. Left untreated, later symptoms may involve the joints, heart, and central nervous system.
Migraine - a chronic disorder characterized by recurrent moderate to severe headaches. Symptoms include nausea, vomiting, photophobia and phonophobia.
Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) - is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.
Mycotoxicosis (another diagnosis of mine) - refers to the poisoning from exposure to mycotoxins. The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure. Age, sex, and health also are determining factors in symptoms. Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation. Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.
NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) - is a common often “silent” liver disease. It resembles alcoholic liver disease but occurs in those who drink little or no alcohol. The main feature is fat in the liver along with inflammation and damage.
Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body. Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.
POTS Postural orthostatic tachycardia syndrome is a condition of dysautonomia (see above). A change from lying to standing upright causes an abnormally large increase in heart rate.
PVC or premature ventricular contraction (another invisible illness I had never heard of) - may be perceived as a skipped beat or felt as palpitations in the chest. They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.
Rheumatoid Arthritis - a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.
Sarcoidosis (A friend once told me she had been diagnosed with this) - Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.
Sjogren’s (again this was something I had heard about bud didn’t know anything about) - a chronic autoimmune disease in which white blood cells attack their moisture-producing glands. Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system. Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.
Wegner’s Granulomatosis - a rare disorder in which blood vessels become inflamed, making it hard for blood to flow. It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys. It is thought to be an autoimmune disorder.
I had never heard of National Invisible Chronic Illness Awareness Week until a week ago. What I learned is that I am so glad that there is a venue where we can gather to tell our stories. I was amazed at how many of us are blogging about our illnesses and the number of illnesses that I had not heard of before or had even thought of as being an invisible illness. I have chosen to follow some of these blogs to keep up with the progress of others.
Kathryn Treat is the mother of two. She was a stay-at-home mother who decided to return to the work force in 1999 when her younger daughter was about to graduate from high school. Shortly after returning to work she began getting sicker and sicker and discovered that she was being exposed to mold in her workplace. After battling the workers’ compensation industry for years, she decided that she needed to write her story to let others know that mold indeed can make one sick. She is in the process of preparing her manuscript for publishing this fall. She also started a blog http://allergictolifemybattle.wordpress.com where she includes excerpts from her book and discuss things she has discovered, including what it is like to live with environmental illness (also known as multiple chemical sensitivity) and food allergies.