Sometimes it’s the little things that make all the difference. And, if you have a chronic condition of any sort – in my case, #vitiligo – there really is no such thing as a small improvement: every #improvement is massive. So, as some light relief between my posts on other diseases related to vitiligo, I thought I’d share with you a very nice – if odd – surprise I had recently.
I’m fortunate enough to have almost fully repigmented over the past 4 years after a lifetime with widespread white patches on my skin. I have always been very observant about the shape and size of every patch of white skin and have observed them as closely as they have diminished as I did when they first started developing. (Anyone with vitiligo will understand how obsessive a person becomes when their appearance is prone to fundamental changes from one day to the next.) However, I only recently noticed something that I had completely overlooked: my ears, which had lost all their pigment years ago are 100% repigmented and I never even noticed it happening. (I suppose it just goes to show that it’s not that easy to see something when it’s stuck to the side of your head!) Although I probably wasn’t as upset about my ears as I was about my face and other areas of my body affected by vitiligo, I do remember thinking they looked as if they were made of wax because of the stark contrast in colour where they peeked out from my short dark hair… a bit like a chimp’s ears, I used to think!
It’s only because I developed quite a tan over the past month or so that this improvement has become apparent. Some of the repigmented areas of my body are still quite freckled (lots and lots of freckles that have mostly joined up but you can still see that there is some slight mottling) whereas others have never produced freckles at all – they have simply faded back to full colour gradually. My ears come into this latter category. The day I noticed that my ears were back to their original skin tone I actually spoke aloud to them in the mirror and said “OMG – it’s soooo good to have you back!”
If you don’t have vitiligo you will think I’m a total nutcase for talking to my ears, but then if you don’t have vitiligo you are probably not reading this blog!
Great to see all the social media activity yesterday on World Vitiligo Day - finally the word is getting out. Education, information and understanding are all helping to reduce the ignorance, prejudice and stigmatisation that has been suffered by those with vitiligo for so long.
Congratulations to everyone who took part in the day, both on and offline. Let's hope that, by the next anniversary, public awareness will be even greater and that medical research will have brought some real breakthroughs, if not a definitive cure!
I have been aware for a long time that vitiligo is sometimes associated with pernicious anaemia (please excuse the British spelling if you are not from the UK). So I finally decided to look at this subject in more detail and pass the information on. I hope you find it useful.
Firstly, what is anaemia? Well, the word “anaemia” literally means “no blood”. It is a condition in which there is a deficiency of red cells or of haemoglobin in the blood, usually resulting in pallor and fatigue. Pernicious anaemia is just one of a number of different types or anaemia. These, in brief, are some of the others:
· Iron deficiency anaemia - this is the most common type, the one that most people tend to think of first, and the simplest to treat.
· Thalassaemia – an inherited blood disorder in which the body makes fewer healthy red blood cells and less haemoglobin (an iron-rich protein in red blood cells).
· Aplastic anaemia – a rare and serious blood disorder in which the body's bone marrow doesn't make enough new blood cells.
· Haemolytic anaemia - a condition in which red blood cells are destroyed and removed from the bloodstream before their normal lifespan is up.
· Sickle cell anaemia - a serious, inherited disease in which the body makes sickle-shaped ("C"-shaped) red blood cells that usually die after about 10 to 20 days so the body can't reproduce red blood cells fast enough to replace the dying ones.
· Fanconi anaemia, or FA - a rare, inherited blood disorder that leads to bone marrow failure.
As far as I am aware there is no connection between vitiligo and any of the above. The only link is with pernicious anaemia. So what exactly is pernicious anaemia?
Pernicious anaemia, as distinct from the other types, is a condition in which the body can't make enough healthy red blood cells because it doesn't have enough vitamin B12. It is classified as an autoimmune disease and is the most common cause of vitamin B12 deficiency. Sometimes people develop pernicious anaemia because they don't get enough vitamin B12 in their diets or through poor absorption due to a variety of factors like: the wrong bacteria in the small intestines; certain medicines; surgical removal of part of the small intestine; or even tapeworm infection. But in most cases it is the body's own immune system that attacks the stomach cells that produce a protein known as “intrinsic factor” which is vital for the absorption of vitamin B12.
Whatever the reason for this malabsorption problem, I find it all the more interesting given that so many vitiligo sufferers, in my experience, report having digestive problems. (I came to the conclusion several years ago that my own vitiligo was due to nutritional deficiencies caused by malabsorption.) Interestingly too, vitamin B12 deficiency is often accompanied by low stomach acid (hypochlorhydria) which is another common condition among those with vitiligo.
Happily, vitamin B12 deficiency can be treated relatively easily - albeit for life - by regular supplements or injections of vitamin B12. But first, of course, you have to know for sure that you have it, so it has to be diagnosed. Having vitiligo is one very good reason to get tested for vitamin B12 deficiency. If, in addition to vitiligo, you also have any of the vitamin B12 signs and symptoms listed below, you would definitely be wise to get yourself checked out.
It is also worth considering the risk factors listed below, especially since having vitiligo is one of them:
You are at higher risk for pernicious anaemia if you
"False negatives (normal levels in the presence of deficiency) may occur in true deficiency, liver disease, lymphoma, autoimmune disease and myeloproliferative disorders. In borderline cases or where B12 deficiency is clinically suspected, other tests must be carried out [..…] Folic acid levels should be measured to exclude deficiency, which may co-exist with B12 deficiency…”
If you are anything like me, you will have read and heard a lot about vitiligo being linked to autoimmunity (and to other autoimmune diseases like including diabetes mellitus, thyroiditis, pernicious anaemia, alopecia areata, Addison disease and multiple endocrinopathy syndrome) but you may be a bit unclear as to exactly what this means.
Of course, the actual cause (or – more likely – various causes) of the condition are still not known for certain but most doctors believe vitiligo to be an autoimmune disease. Autoimmune diseases occur when your immune system mistakes some part of your own body for an intruder (e.g. those shown in the diagram above) and attacks it. In the case of vitiligo, the white patches that appear may be the result of the immune system attacking the melanocytes (pigment- producing cells) in the skin. In other words, your own immune system, which is designed to protect you from infection, becomes “over-enthusiastic” and starts attacking your own healthy cells.
The question I have often asked myself in relation to autoimmune diseases is: what is the correct way to treat such a condition? Should you strengthen your immune system (as conventional wisdom dictates in the case of all other diseases) or should you do the opposite and suppress your immune system (on the basis that it is this that is causing the problem)? I have asked several dermatologists and a couple of nutritionists this question in the past and never had a definitive answer.
The answer I have found that make the most sense to me is that it is not as black and white as either strengthening or suppressing the immune system. But rather, it is a matter of stabilising and balancing it so that it returns to normal functioning.
The immune system is not an organ – it is not localised in one area of the body but spread throughout it. However, the gastrointestinal tract contains the largest number of immune cells of your whole body, constituting approximately 60% of your entire immune system. In my opinion, it is no coincidence that most vitiligo sufferers I speak to have digestive problems: it seems logical that digestive and immune disorders often go hand-in-hand. And it also seems logical that the best way to normalise malfunctioning digestive and immune systems should be through nutrition.
There is every reason - including my own personal experience - to think that strengthening the digestive system will also balance the immune system (and maybe vice versa) and that this, in turn, will then stop attacking the body, resulting in recovery from autoimmune symptoms (in this case, vitiligo).
So, what should we be eating if we want to heal our digestive and immune systems? This useful website lists the key nutrients involved and, interestingly, those listed all feature prominently in the greenfood supplement and Boost capsules that I took to re-pigment my vitiligo, e.g. protein, B vitamins, antioxidants, vitamins A, E, K and D, zinc and iron. Glutamine is also recommended for healing the lining of the stomach and for strengthening the immune system.
Of course, eating for digestive and immune health also means avoiding foods that are harmful to both, like excess sugar, alcohol, caffeine and processed foods as well as any known allergens or food intolerances (for example, many vitiligo sufferers seem to be sensitive to gluten).
So, it seems highly likely that the route to curing vitiligo is, in fact, via the stomach.
Continuing this series about the links between vitiligo and other diseases, this post is about the adrenal glands. Whilst stress is often cited as a trigger for vitiligo, the possible role of the adrenals in pigment loss is not widely documented and therefore most vitiligo sufferers are – like I was - probably unaware of any link. What I have read on the subject leads me to conclude, yet again, that vitiligo is often (if not always) a symptom of other systemic conditions rather than a disease in itself.
So, first things first – what and where are the adrenals? The adrenal glands are two small but very important glands, situated one above each kidney, which produce a range of hormones, or 'chemical messengers' involved in regulating crucial functions in the body, including blood sugar and blood pressure levels, heart function, metabolism and immune response. Each adrenal gland consists of two parts, each of which has separate hormone functions and control mechanisms. The adrenals are the major glands the body uses to respond to stress. Closely associated with the sympathetic nervous system, the adrenals are part of the fight-or-flight response which is triggered under stressful conditions.
Underactivity of the adrenal glands is called hypoadrenalism but is often referred to as adrenal burnout, adrenal fatigue, adrenal insufficiency or Addison’s disease. It occurs when the adrenal glands do not produce enough of the hormone cortisol and, in some cases, the hormone aldosterone. When the adrenals become depleted, the body is unable to handle stress properly.
The main symptom of hypoadrenalism is constant fatigue, which is not relieved by sleep, but this may also be accompanied by a craving for sweet foods, low blood pressure and low blood sugar, irritability and depression. Increased skin pigmentation, poor digestion, weight loss and susceptibility to infections, as well as joint and muscle pain, may also accompany these symptoms.
Underactive adrenal glands can be the result of the immune system mistakenly attacking the adrenal glands (autoimmune disease) and in this instance can be associated with other autoimmune conditions, including vitiligo.
What this means for anyone with vitiligo who also suffers from Addison’s disease (hypoadrenalism), or from any other autoimmune disease for that matter, is that any improvement in that condition may also improve their vitiligo.
A lovely lady recently emailed me with an example of exactly this. Her 12 year old daughter has vitiligo but has seen tremendous improvement as a result of treating her adrenal glands. The mother says:
"My daughter has an extremely sensitive system so we have to be very careful what we give her. I believe that her system is very sensitive because she is highly emotional and her immune system is over active. The key to vitiligo is to calm down your immune system so it stops attacking your melanocytes, you have to retrain it. Once you have retrained your immune system you will not get any more vitiligo. It takes two to three years from what I have read to retrain your immune system. The way to do this is to get rid of the triggers that cause your immune system to react. For my daughter it is stress (adrenals) and digestion. I have a journal and have written down all her white spots and the events, foods, or vitamins that could have caused them. Since her body is not covered with the white patches it has been easier for me than maybe others to keep track of new white spots that may come. I document it and keep track of it to see if it gets worse, when it does it has been easy to figure out, it is usually something we added or not giving her enough of because we cut back.
There is a saliva test you can take to see if your adrenals are functioning properly. It is a cortisol test which involves spitting into a tube 3 times in the course of one day at different time periods. It measures how your body deals with stress throughout the day. You mail the tube back to the lab and they send you the results back. You can google labs that will do this test on the internet... Our Natropath gave us a tonic called ashwaganda wathina. It is amazing stuff, I use it myself. It heals the adrenal glands from the inside out. We saw positive results with my daughter right away and within 4 or 5 months her spots were gone from her knees.”
As well as using ashwaganda, this lady has also been trying to teach her daughter meditation, breathing, and spiritual awareness, as well as giving her a similar nutritional regimen to the one that enabled me to re-pigment my own vitiligo, all of which has apparently helped her adrenal fatigue and her vitiligo. It seems reasonable to me to conclude that, in her particular case, the underlying cause of her daughter’s vitiligo is probably poor adrenal function and that anything that she does to alleviate the adrenal problem has a positive impact on her vitiligo too.
Once again, this makes me wonder if vitiligo sufferers and doctors alike sometimes spend too much time and energy focussing on treating the skin and not enough on treating other conditions that are in fact the root cause of pigment loss.
My name is Caroline.