First and foremost IgAN is an autoimmune disease that is driven by genotype.
That means if one has the genes for this autoimmune response then one is prone to have IgAN as a disease.
Ones phenotype, the expression of ones genes in the physical reality of the individual is influenced by life as in what challenges your life and life style put your genes and kidneys under challenge.
Don’t wait until your condition is dire to begin treating it.
This is a live document that is being used to start the process of writing an IgAN Primer for self help. Come back to see what has changed, do make comments and contributions of knowledge, all ideas are welcome.
The principal source of the autoimmune proteins, the IgA types (dimeric and polymeric IgA) that are associated with the disease in the kidneys come exclusively from ones thymus derived immune system, that’s the human primitive immune system. Any and all challenges to that part of our immune system elicits a response that aggravates IgAN the disease.
Surely all forms of suppression of that part of our immune system helps in IgAN. Also helping is the elimination of challenges that stimulate that particular immune system.
Pharmaceutical immune suppressants like steroids and high tech meds like transplant anti-rejection meds of one of which is mycofenelate mofetil work. So does the surgical removal of especially virulent overactive parts of people with a vulnerable immune system, aka tonsils. Both the chemical reduction of our immune response and auto-immune reaction and the surgical reduction of our immune response work quite well but of course have a great amount of variability, there’s where the phenotype problem shows up.
Just about any and all immune stimuli that we can reduce and/or remove will help with auto-immune diseases of all kinds especially IgAN. So one might start taking anti-inflammatory medications and concoctions especially the simple ones natural product originating ones like aspirin which evolved right alongside our human evolution of our immune systems. Any and all forms of inflammatory response stimulate the production of IgA proteins.
Elimination of dietary immune challenging foods will help too. Hence the positive response of many to reduction of immune challenging foods like grains or the addition of immune supportive pro-biotics. There is much more to the world of immune stimulation but this is a start.
One Size Does NOT Fit All
The ecology of IgAN is complex and varies greatly from person to person, family to family, and cultural common features. It is up to the individual to become a careful and observant investigator of their own and family members IgAN. Only through collection of lots of data and allowing that data to speak to you can you learn how to manage your own condition. Doctors may be useful but they are impatient and rather inept ecologists and are prone to following their guilds and medical payer rule books with far more attentiveness than they pay to the time consuming task of getting to know and understand a given patients condition. Hence they simply push the simple decisions for them which are almost inevitably the wait until the disease is truly dire then treat with the expensive and profitable prescribed practices.
Early aggressive treatment with low cost solutions is clearly the path which will lead to the most positive outcomes for those of us with IgAN. These early aggressive treatments take a lot of effort to determine.
My advice is to be your own best doctor, study yourself, your symptoms, your lifestyle, gather data through careful observation of you physical, mental, and medical self. Don’t just rely or abdicate your own health and well-being to some other person, aka a doctor, whose motivations are surely far more complicated that your own.
This is my advice as an IgAN patient forced to dodge a fatal prognosis by learning how to make the best medical decisions for myself, I had lots of help learning from great and terrible doctors along the way as well as countless IgAN patient/friends.
Here’s a start on a Brief Primer on how to become your own best IgA Nephropathy Nephrologist.
This section presumes you have a diagnosis of having IgAN or have a high risk such as a parent or family member with kidney disease. Start collecting data on your condition (or of a loved one close to you with IgAN). There is lots of data close to hand.
Those are the data sets you can readily start collecting and saving, ideally in a journal, but even in your memory is better than nothing.
Your sex, age, weight and especially weight gains or loss, race, physical condition or lack thereof, exercise routines, all are vital data sets.
Your diet, calories per day consumed, food groups that are part of your diet,
Since IgAN is a disease of the kidneys your kidney health is the place to start.
Your kidneys provide you with lots of observable data, everyone pees out liters of data every day.
- Amount of urine produced each day, is it more or less than normal, much less is bad!
- Colour of urine, is it more or less yellow, less yellow is bad!
- Foaminess of urine, is it more or less foamy, more foamy is bad!
- Number of times per night you wake up having to pee, more times is bad!
What your skin tells you about your kidneys.
- Do you have some amount of edema, puffiness, water retention, less is better.
- Where do you have edema, feet, lower legs, left leg vs. right leg, face, hands,…
- Do you have itchy skin, or some form of dermatitis, less is better.
What your kidneys might tell you. Do you have lower back/side pain, aka kidney pain?
- After exercise, or not associated with exercise…
- Late in day or night or other times…
What other common health issues tell you.
Do you have frequent ailments
- Sore throat
- Ear infections
- Colds & Flu
- Mouth, tooth, or gum disease
Do you have common intestinal distress or disease
- Heart burn
- Stomach aches
- Irritable bowels
- Lower intestinal pain or distress
- Bloating or abundant gas
- Too hard or too soft bowel movements
Do have thin or thick fingernails and toenails
Do you have frequent and long lasting skin irritations
Do you have sores that readily become infected and do not heal within a few days
Do you have athletes foot fungus or other fungal skin disease
This is my start of this LIVE IgAN and Kidney Health Primer, aka guide. If you have comments of ideas to contribute please submit them via the comment form below.