I write a lot about my disabilities and illnesses. I’ve discussed what trips to the hospital are like and what a regular day can look like. I’ve shared advice for new patients based on what I’ve discovered myself in the time I’ve lived with them. I have never, however, taken the time to just put together a list of definitions of what those various conditions and disabilities are.
So without further ado, I introduce a glossary of my weird body stuff.
Autoimmune Condition – autoimmune diseases refers to a group of conditions where your antibodies treat parts of your own body as though they were possible pathogens and attacks it. This usually results in inflammation in the affected area. The type of autoimmune disease is usually determined by what exactly is being attacked.
Crohn’s Disease – An autoimmune condition and Irritable Bowel Disease, where the body attacks the digestive system causing parts of it to become inflamed. Usually the majority of the inflammation is localized the colon and large intestine, however it can also cause symptoms throughout the entire digestive system. When intestines become inflamed they become extremely fragile which means that the internal lining can be irritated and damaged by different foods and movements causing pain, ulcers, and bleeding. Sometimes the swelling can cause part of the bowel to be blocked which may require surgery to be corrected, or even cause parts of the bowel to die and need to be removed. Inflammation of the intestinal lining can also lead to malabsorption issues leading to malnutrition. There is no cure, but it can in some cases go into remission.
Fistulizing Crohn’s – The specific type of Crohn’s Disease I have where my body is predisposed towards creating fistulas. So far I’ve only had one.
Fistula – a fistula is a connection or bridge that is formed between two or more organs. One example is a connection that forms between the colon and the outer skin of the anus, which can cause leakage of bowel matter.
IBD– Irritable Bowel Disease – a category of diseases causing irritation of the bowel that includes Crohn’s and Ulcerative Colitis.
IBS – Irritable Bowel Syndrome – a group of symptoms including pain, changes to bowel movements, bloating, and so forth which appear without evidence of damage and are currently of indeterminate cause although there is a clear link to stress. IBS and IBD are not the same thing. There is no cure only symptom management.
Psoriatic Arthritis – An autoimmune condition that is linked to the skin condition known as psoriasis which causes inflammation in the joints. It is similar to Rhumatoid arthritis in that it is an inflammatory arthritis although it frequently also presents with psoriasis. The inflammation of the joints causes pain and restricts movement, and if it isn’t sufficiently reduced can lead to permanent damage and structural changes to the affected joint. This arthritis usual attacks the external joints – hands and feet – primarily however in some cases it can attach internal joints like hips, spine, shoulders, and so forth. In my case the inflammation was left uncontrolled for so long that it wore away about half the cartilage in my hip joint and caused the bone to become jagged permanently restricting movement. There is no cure but it may occasionally go into remission.
Ankylosing Spondalytis – Another inflammatory arthritis that affects the vertebrae of the spine and eventually causing degeneration and even fusion. In some cases it can lead to a hump being formed. Among other things it causes pain and stiffness of the spine and can cause problems with lung expansion, movement, and so on. There is no cure, only symptom management and the hope of remission.
ADHD – Attention Deficit and Hyperactivity Disorder – a condition caused by a lack of dopamine that is characterized by a difficulty in directing focus and a tendency towards hyperactivity – physical and verbal. It can be treated with stimulants which help encourage dopamine production, and can also be helped by directing the hyperactivity towards less disruptive or harmful stimming behaviours (such as providing a fidget chair so they don’t keep standing up, or providing a chew pendant to keep from destroying pens.)
Fibromyalgia – a medical condition characterized by widespread pain and an increased pain response to pressure. It also causes fatigue, memory problems, and sleep issues. While for a long time it was believed to be a psychological condition, there is increasing evidence that it has to do with the way that the brain processes pain and pressure sensory input causing an amplification of the pain felt – making it a neurological disorder. It has no cure but the symptoms can be managed with pain killers and certain medications like anti-depressants that have been shown to reduce neuropathic pain.
Sleep Apnea – a condition where a person’s breathing is restricted or completely blocked at various points throughout the night, resulting in reduced oxygenation. Sleep Apnea can contribute to heart disease among other things as a result of the reduced levels of oxygen inhaled throughout the night. It causes you to be very sleepy even after sleeping. It is treated with a CPAP or APAP
CPAP – Continuous Positive Air Pressure – a machine that basically blows air at you through a mask. The increased air pressure keeps the airway open and makes sure that you stay oxygenated throughout the night, or at least keeps you breathing. An APAP is essentially the same thing except instead on one specific pressure level, it adjusts the pressure throughout the night depending on your needs.
Biologics – genetically engineered proteins made from human genes that are used to target specific parts of the immune system in order to treat autoimmune conditions. In the case of the series of drugs that I’ve been on – Enbrel, Humira, Remicade – all specifically target TNF or Tumor Necrosis Factor. They basically operate on the antibody by stopping up the lock in the lock and key model of the enzyme, so that it cannot trigger the immune process that leads to inflammation.
Tumor Necrosis Factor – a signaling protein used by the body to activate fever, inflammation, cell death, and other such immune responses. It is the protein or antibody associated with most of the autoimmune disorders that I have and is the one that is targeted with the biologics I take. One of the things this antibody does is limit the growth of certain cancerous cells. It is also the first line of defense against upper respiratory conditions which is why the biologics that target it make me more susceptible to those types of infections and increase my risk of those cancers.
Remission – When a condition becomes symptomless or very nearly symptomless for a period of time, where the symptoms or disease has a chance of coming back, higher than the chance spontaneously developing the condition. It’s sort of like being cured temporarily, but with no way of knowing if or when the symptoms will come back. It’s the goal you strive for with incurable conditions.
Prednisone – a corticosteroid that is synthetic and is used to treat certain autoimmune and inflammatory conditions since it acts as an immunosuppressant. It has a lot of adverse side effects, both temporary and long term, including weight gain, moon face, pulling the calcium out of your bones, and hip damage. Since it is a steroid it can also cause mood changes including irritability and anger.
Methotrexate – a form of chemotherapy that acts as an immunosuppressant and is used to treat autoimmune conditions. I was on this medication for close to a year while dealing with my major arthritis flare. This medication is also used at higher doses to treat certain forms of cancer, and is used to dissolve ectopic pregnancies.
Flare – when symptoms of a certain condition become active or more pronounced. For example an arthritis flare means that my joint pain is acting up. A crohn’s flare means that my crohn’s symptoms are worse such as increased bathroom trips, more pain, and more nausea.
If there is anything else I’ve mentioned that you are unclear as to what it means, please feel free to ask in the comments and I will do my best to answer.