Thursday, June 30, 2016

The Problem of Having an Exotic Illness

Hairy Cell Leukemia on a blood slide 
Do you have a garden-variety health practitioner who deals only with the garden variety illnesses?  You still feel ill even after he or she has told you that your blood counts look normal?

I would like to share something with you that you may not be aware of, especially if you are newly diagnosed with some type of rare blood disease. Leukaemia is cancer of the blood and there are 17 different types, some more aggressive than others.  Having a rare one makes it that much more difficult for the patient because doctors are either not interested or know nothing about it.  Given that the average visit to your GP lasts 11 minutes, there is very little time to inform him or her about your type of illness.   Leukaemia means that it is also in the bone marrow and the spleen must remember that blood is the life force and without it we are dead and when we have something wrong with it – it circles the entire body giving rise to a whole host of symptoms. A full blood count means absolutely nothing when it comes to a rare disease and if your doctor has not realized that by now, it is time to review and perhaps change your medical health practitioner. The other thing you could do is to attempt to educate them and if that does not help, then do what is best for you. Change to someone who cares as much about your health and comfort as you do. 
Some examples: Platelet counts are one of the important counts when you have HCL – but having a normal or even being on the top end of normal platelet count means absolutely nothing. Did you know that the liver produces two enzymes (PT and PTT) which actually put the blood clotting factor into the platelet? My platelet count is perfect – but I have almost zero PT and PTT and therefore I bleed easily. 
Having a good result for white and red cells also means next to nothing to us – if the white cell is not mature, it cannot do the job of killing the bacteria, fungus, virus or cancer. If the red cell is immature or has too much iron, it cannot carry sufficient oxygen. 
If we, who have rare disease, do not become our own detectives, do our own research and take responsibility for our own health … leaving it in the hands of doctors who do not know better, we will not survive. As one professor told me, “Doctors only see what they recognise and only recognise what they have been taught”. This means that if there is an anomaly – a strange cell that should not be there – the doctor will just not see it. A normal FBC does not take into consideration the function of the cell and if a cell does not function then what use is the cell count?
Stop listening to the “Your blood looks good “just because it looks like everyone else’s blood. If those results were so good, then why do some of us still feel so ill? Find another health practitioner who has the capacity of listening to you and looking beyond the obvious.  There are only a handful of us with a rare leukaemia so we have to be the pioneers and go through raging rivers of doubt and illness, most of the time rudderless.  It is up to us to become the detectives and educate those around us.   Having a support group that shares information is possibly one of the best ways of gaining knowledge that will lead to a better management of our condition.  For those who have HC Leukaemia or HCL Variant, I invite you to join our FB page called Hairy Cell Leukaemia Support Group.  The knowledge you will gain there can only be of benefit to you and your health management team.  There is still no cure for this disease.  But by improving your knowledge you may be able to bypass further conditions that are linked to the blood and the immune system.   You need to know what blood tests to request.   Having Secondary Immune Deficiency from the chemo is easier to manage than having Primary Immune (PI) Deficiency.  The first can be treated and more than likely rectified.  If it is left undetected it could become PI and then you have another life-threatening, chronic illness to contend with.  Knowledge can save our lives. 
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