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Iron On The Brain: No News Is Not Good News

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Way back in 1993, I was honored and quite overwhelmed by an invitation to attend a meeting with representatives of the World Health Organization, and thus became a member of what would later be referred to as the "First Unofficial Advisory Board on the Control and Prevention of Hemochromatosis." We met at Kyriat Anavim in Israel, and this meeting was followed by the first " BioIron" conference in Jerusalem, where experts from around the world gathered to present papers and answer questions. After this, fired with enthusiasm, I could not wait to get back to Canada and share with the Board and members of the Canadian Hemochromatosis Society all that I had learned. This would have to be postponed however, as, before I could leave the airport in Telaviv, I received bad news about a seriously ill, close relative in South Africa, and ended up in Johannesburg instead of Vancouver.

That is how it came about that the first newsletter of the International Association of Hemochromatosis Societies was written in, and circulated from, South Africa, and now, paging through a copy of that 17-year-old the document — in which I reported what I had heard Professor Laurie Powell of Austrlia say concerning "iron in the brain of Parkinson's patient," and the problem of its being behind the "blood-brain barrier," from where it could not be chelated — has me agonizing again and again about the snail's pace of progress.

It has long been known that iron can indeed accumulate in the brain. As far back as 1989, the late Dr. Leslie Valberg and others of the University of Western Ontario published an article on Abnormalities in Iron Metabolism in Multiple Sclerosis (Can J. Neurol.Sci, 16: 184 – 186). It is also commonly known that there is iron in the brains of Parkinson’s patients.

I have personally written reams about the effects of high iron stores on and in the brain, and this information appeared in both the IAHS newsletter in Johannesburg, and later was also published in the newsletter of the Canadian Hemochromatosis Society, in the August of 1993:

On November 21, 2009, I noted: Big news! I am drowning in emails from people advising me that, today, there is to be a special program on the Canadian CTV channel literally about “iron on the brain!” I’ve had to take my phone off the hook!

Six years after Oct. 22, 2003 when "Multiple Sclerosis Tied to Iron in Brain — Studies Point to Cause, Location of MS Brain Damage," was the heading of an article by Doctor Daniel J. DeNoon, published in WebMD Health News.

"Iron deposits deep in the brain may cause multiple sclerosis, new imaging studies suggest. … The findings," he wrote, "come from studies of computer-assisted brain scans using a specialized magnetic imaging device," and he then went on to tell that University at Buffalo, N.Y., researchers Rohit Bakshi, MD, and colleagues were the first to use this technique.

"Multiple Sclerosis has been considered a disease of the white matter in the brain and spinal cord — the neural pathways that allow areas of gray matter to communicate with one another." But the new findings link iron deposits in the gray matter to movement and thinking impairments in Multiple Sclerosis.

"If we're going to treat this disease," Dr. Bakshi reported at the annual meeting of the American Neurological Association in San Francisco. "We have to know where the damage is," he is quoted as saying in a news release. "Traditionally, we thought MS was strictly a white-matter disease. … We were able to visualize gray matter structures deep in the brain of MS patients and found some to be atrophied." He added that it was not yet clear that the "iron is the cause of the brain damage. It could be that dying brain cells leave a trail of iron behind."

That Blood Brain Barrier
So here I am, after watching Michael J. Fox participating in a commercial promoting the 2010 Olympics and in the closing ceremony, still ardently hoping  that what I was advised to listen to last November really does lead to the ultimate breakthrough. Sadly, of course, even if the researchers do come up with a procedure for getting the iron out from behind the blood brain barrier, it could be too late for those who already have suffered organ damage, there will be hope for those who are tested and treated early enough.

It appears that, while we should normally be protected by this "barrier" that  prohibits foreign substances from flowing through the walls of our capillaries into our brains, it is somehow defective in some people, and if iron is able to be stored behind it, the results can be tragic.

Now we wait for updates on the recent news to the effect that researchers in Italy are working on a procedure to "open the blocked drain," as it were.  This would allow that iron-filled fluid to flow back into the bloodstream from where — after our internal organs have dealt with the processing of it — venesection (which is the "blood-letting" procedure used to de-iron patients with hemochromatosis) can do the same for those afflicted with Multiple Sclerosis and Parkinson's.

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About Marie Warder

Born in South Africa, became a journalist and later trained as a teacher before establishing my own school - "Windsor House Academy, of which I remained the principal until I emigrated to Canada. Love to write, and have published 27 books. Played the piano in my husband's dance band for 33years. Founder and President Emerita of the the Canadian, South African and in International Association of Hemochromatosis Societies, http://en.wikipedia.org/wiki/Marie_Warder
  • For Elizabeth. Thank you for the valuable info you posted in March. For reasons that would take up too much space to provide here,I have only just read what you wrote.

    Posting #6.Thank you for your kind remarks.

  • Great article, I had no idea about this, how iron can be accumulated in the brain. There is somuch we have to learn about oruselves and our brain. Is a huge system we will never stop learning from it!
    Great article!!

  • Elizabeth

    There has just been an important conference in Italy by the ISNVD. Abstracts here

    Interestingly research released last week shows people with MS have a high incidence of being homozygous for FPN1 8GG, Ferroportin, Type IV hemochromatosis, amongst other iron genes noted. Makes sense, ferroportin is the iron exporter.

  • tracy martin

    i have now had the results of my liver and now they are telling me it looks like iron on the brain instead of copper wilsons disease. now they are telling me that i have to go to london to see i guy [doctor]. in this type of disored and if it is there is know cure it is a really rare condition and alot of doctors know nothing about it but my doctor has been looking up on it.

  • tracy martin

    the doctors in scotland thought i had copper on my brain so in a week 3 june i have to go in to hospital to have a part of my liver taken but that is the last resort for me if they find no copper then i havve to go to london to see an iron on the brain specilte i have had sypmtoms like first my speech started to slurr then i realised that my hands were,nt working that well next my balance went i have been told that this is a rare condition and they my be no cure can somebody please try and give me these answer to my questions cause i im seriously worryed about my out come thank for your time in reading this message tracy

  • Sandy

    So that’s how it works! I have been wondering about this. Thanks for this article and also for all the others you contribute. Loved the one about your mother and the “air ace”.

  • Basil K.

    Thank you for elucidating so much of what s was beyond me until now.

    With HH in the family, we look forward to more postings.