Hello beautiful people,
So many things have happened in the last month that it seems almost surreal. There's a lot for me to post about and a lot of playing catch up for me to do. Owing to my illness, I was admitted to hospital for a while and just truly didn't have the energy to devote time to writing anything. So yes, I have a billion and one new things to share. But for now I'm going to focus on something extremely important - The Autoimmune Disease Awareness month of March, #ADAM.
The American Autoimmune Disease Related Association Inc. (AARDA) is an NPO dedicated to serving the autoimmunity community. They help raise funds, aid in research, provide a platform for patients to share their stories as well as provide support for patients and their loved ones. They have dedicated the month of March to spreading awareness of the vast and complicated world of autoimmunity. To browse their website or make a donation, click on the link: https://www.aarda.org/ .
What an amazing time to dedicate a post to explaining Autoimmunity(AI) and to FINALLY fully launch my blog.
Heads up: there there may be some overlap between this post and my previous one, which explains in detail, the disease that I have.
What is Autoimmunity (AI)?
To put it simply, autoimmunity(AI) is a state in which the immune system, normally a finely balanced part of the body that protects our bodies against pathogens ('bugs') and diseases, is kicked into overdrive and triggered by a host of different factors, to attack our own bodies. The direct translation: "Auto" - self, one's self, "immunity" - the ability to resist particular diseases by preventing the pathogen/"bug" from living and multiplying within the body or by counteracting the effects of its products.
The easiest way to explain the imbalance that happens in AI is to think of the immune system as a combative force made up of different types of fighters. These fighters have different tasks and different styles of fighting to attack and kill off invaders and threats to our bodies. There many different fighting techniques including producing chemicals, eating and digesting the invader, poking holes in the invader to allow the chemicals inside, to name a few. There is also the master mind which controls each element of the fighting force. It makes sure the combat runs smoothly, calling an end to the war before there is too much damage to the body and keeping a memory bank of each and every threat/invader. These memories are stored and recalled if the invader ever comes back, reactivating the exact method of destruction that worked previously and ensuring that the threat is dealt with swiftly and smoothly, without causing too much of a scene.
In AI diseases, there is something that triggers or activates the immune cells, which usually fight off invaders/threats, to recognise certain cells/tissues in the body as foreign invaders instead of "self", which results in the immune cells attacking the body's cells/tissues. The immune system forms antibodies against these "self" cells/tissues, small proteins that trigger certain immune cells to attack by attaching to antigens on these specific "self" cells/tissue. Putting it frankly, you are at war with yourself. This attack causes an inflammatory response, there is a cascade of reactions and the release of chemicals that occurs, which involves the entire body and this leads to generalised inflammation within the body, ie, the immune system goes haywire, attacking its own specific tissues, causing severe damage to the tissue as well as causing massive generalised inflammation.
Generally, it takes many years for doctors to make the diagnosis of an AI condition. More often than not, patients will suffer for many years with vague symptoms such as fatigue, malaise, fevers, weight loss or weight gain, joint and muscle pain, non specific pains, tingling in the limbs etc. Generally, once the disease has become so severe that it causes extensive visible malformations or significant organ damage, only then is a full work up conducted and a diagnosis made. Patients can be told that they are hypochondriacs and attention seekers, and that it's all in their heads, I know this happened to me more than a few times, and more often than not they begin to believe it. However, they always know intuitively that there is something seriously wrong.
What are the symptoms?
It's always somewhat difficult to specify exact symptoms of AI diseases because they can cause such a vast array of symptoms and different presentations.
Typically, patients suffer from constitution symptoms and non-specific symptoms. These include the aforementioned symptoms, as well as skin involvement with rashes, enlarged lymph nodes, muscle weakness and wasting, abdominal pain and digestive problems, dry and red eyes, mouth ulcers, hair loss, memory and concentration problems and generally feeling terrible. Bearing in mind that certain symptoms are associated with specific types of autoimmune conditions. If left undiagnosed and untreated, as in most cases, the disease evolves causing worsened inflammation, worse symptoms and begins to cause malformations of the joints, skin, facial structures, and damage to vital organs including the lungs, kidneys, liver, heart, brain, nerves and vessels, at which point the disease becomes acute and serious, often life threatening.
Most of the conditions are waxing and waning, meaning the symptoms come and go. Patients can have good day and bad days, prolonged months and even years with or without symptoms - patients can enter into remission and be symptom free for a period of time and then relapse again. Some days it is near impossible to get out of bed, the fatigue and pain is too debilitating to even get through the day. Other days are easier, you feel stronger but never better - every day is challenging, every day you have to fight.
Putting this all together, one can imagine how difficult it is to be a patient with one of these conditions, to watch a loved one go through it, to be a doctor at the other end trying to help and understand. It is not easy, but with a fantastic support structure and adequate treatment and control, it is possible to live with, even overcome.
Who, where, why?
Each AI condition has it's own statistics making it difficult to generalise, however, most of the conditions follow similar stats, excluding the obvious outliers. Another important fact to keep in mind is that the world of autoimmunity is relatively new - discovered as recent as 1950s/1960s, making it a baby in the world of medicine.
For unidentified reasons, it is shown that AI conditions affect females more than males at a ratio of around 2 : 1. Age of onset can range anywhere from teens to pensioners. Certain diseases have a predilection for ethnicities, for example Lupus (Systemic Lupus Erythromatosis or SLE) is more prominent in the African population than the Caucasian population.
Most, but not all, conditions are hereditary and will "run in the family". So genetics can play a role in contributing to the development of these conditions. Other predisposing factors include chemicals, infections, certain medications, hormones, smoking, obesity, stress, diet and the gut (a topic for another post). These things trigger the immune system and contribute to its misfiring.
According to AARDA, there are currently over 50 million people in America diagnosed and living with AI conditions. More and more people are being diagnosed and there is a gap in the awareness of these conditions, awareness needs to be raised.
How do you diagnose it?
As mentioned previously, it can take many years and seeking out many different doctors, a host of tests and investigations to make a diagnosis. More often than not, a big flare is what it takes to make a diagnosis, meaning the patient often becomes very ill from the disease in order to figure out what is going on.
Each disease has it's own specific criteria that need to be met for a diagnosis to be made, but the normal work up is as follows:
Signs and Symptoms:
It is important to have specific signs and symptoms, as mentioned previously.
The doctor will also look out for any signs of the disease, malformations or evidence of organ involvement.
As previously mentioned, antibodies are produced, by the immune system, and are targeted against specific "self"cells or tissues, which then result in the immune system attacking the cells/tissue. These antibodies are present in the blood and a simple blood test will be able to identify their presence. There are a number of different antibodies that are associated with different AI disease - see below.
Other important blood tests would be markers that look at inflammation within the body, as AI conditions are associated with high levels of inflammation. Some of these markers include C-reactive protein (CRP), end sedimentation rate (ESR), interleukin 6 (IL-6) and tumour necrosis factor (TNF), to name a few. If these are raised they indicate that there is inflammation and active disease.
Doctors will also request liver and kidney function tests, possibly a full blood count, viral studies and hormone levels if necessary.
Xrays, ultrasounds, CT scars, MRIs may all be needed to assess the level of the disease and the involvement of organ systems.
Scopes may be needed to asses stomach and bowel involvement.
A biopsy of affected organs is an important part of diagnosing the disease as it will confirm the diagnosis, however, it is not always possible and is not absolutely vital.
How do you treat it?
The conventional treatment often consists of appropriate pain management with Non Steroidal Anti-inflammatories or opioid derived medications and immunosupressive medications to dull down the immune system and significantly reduce its fighting ability to prevent it from attacking the body. The common medications used include steroids and chemotheraputic drugs/ disease modifying agents. While the advances made with these treatments are phenomenal, they come with a hefty list of side effects and can leave patients at risk of developing other diseases, as well as feeling rather awful.
Life style changes, dietary modifications, exercise, attitude, belief and stress management play an exceptionally large role in gaining and maintaining control of the disease.
I decided to make myself a bit of a guinea pig and with the help of my incredible team of doctors, as well as my own medical knowledge, I have decided to try something new and alternative to treat and control my disease, which I will discuss in a post soon.
What's the prognosis?
This is dependent on the individual patient, the individual condition, the stage at diagnosis and the progression of the disease.
These conditions can be extremely vicious, rapidly destructive and lethal, they can be slowly progressive, they can go into remission and relapse repeatedly or remission can be maintained - this is the goal. So medically we'd say the general prognosis is "guarded".
With adequate treatment and control, a positive outlook, a good support system and a healthy life, it is manageable and can be overcome. It is never and will never be easy, but if you and/or your loved ones are focused and committed to getting better and you embrace the journey, there are endless lessons and growth, and pretty magical moments too.
What are the diseases?
According to AARDA, there are over 100 AI conditions and about 40 other diseases that have an AI basis. I'll list a few here:
Inflammatory Bowel disease
Type 1 Diabetes
Thyroid related - Grave's, Hashimoto's, Thyroiditis
Systemis lupus erythromatosis (Lupus)
Mixed connective tissue disease
Chronic Fatigue syndrome
Vasculitis - Wegner's, Microscopic polyangiitis, polyarteritis nodosa, takayasu's, Bechets, Beurgers, Giant cell arteritis, Henock Schonlein purpura
Multiple Sclerosis (MS)
To end off - I wrote a little something from the heart.
We fight every second just to feel "okay",
Just to partake in a normal day,
To do what most people take for granted,
Others' lives often seem enchanted.
It's a constant battle, wrought with frustration,
Exhaustion, pain, suffering and devastation.
But through the hardship, there's so much beauty,
So there's something that I've made my duty.
I will spread truths, stories and awareness,
Allow my voice to illuminate fairness.
Through the journey that the disease presents,
There is learning and growth and brilliance.
Personal discovery, strength and courage,
Through it all you can truly flourish.
Please help support all those in need,
With awareness, love and a friend indeed.
Happy Autoimmune Disease Awareness Month, please be kind to those suffering, provide support and love and mostly respect, you never know what someone else is going through. Stay strong fighters!