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Genetic Haemochromatosis (Iron Overload Disease) Options · View
lnire
Posted: Tuesday, November 10, 2009 1:56:05 AM
Rank: Newbie
Groups: Member

Joined: 11/10/2009
Posts: 1
Points: 3
Location: australia
I was diagnosed with this illness just over 18 months ago. Luckily for me ( I hope) my MD caught it before the Ferritin Serum levels had a chance to esculate. Basically, in simplistic terms, the body, because of a genetic mutation, grabs excess iron and transports and stores it various major organs (I did say it was simplistic explanation). Primary symptoms, which can mirror many other illnesses, are "arthritic" joint pain; painful skin and bones; and chronic fatigue. Once diagnosed the solution is regular venesections.

Trouble is that, even though the medical profession has been aware of Haemochromatosis for decades, they are only just starting to take the illness seriously. The "knock-on" effects of iron overload can be life-threatening and misdiagnosis can lead to incorrect drugs be prescribed.
Canada seems to be coming to grips with this better than most countries.
They describe the illness as: VERY COMMON; VIRTUALLY UNKNOWN; POTENTIALLY DEADLY; and EASILY TREATABLE.

I was interested to see, in yesterday's e-news, a reference to Lactoferrin:
"Studies show that lactoferrin binds iron in your blood, keeping it away from cancerous cells, bacteria, viruses and other pathogens that require iron to grow." I wonder if anyone is looking at this a possible aid to preventing excess storage. I have also seen reports, from the Internation BioIron Conference 2009, that the peptide hormone, Hepcidin, may be another solution.

Anyway, I would be interested to hear from anyone who has something to say about this disease/illness.
marion westoll
Posted: Tuesday, November 17, 2009 11:01:46 AM
Rank: Newbie
Groups: Member

Joined: 11/17/2009
Posts: 3
Points: 9
Location: canada
Hello, i to have genetic hemachromatosis. I have two copies of the genetic mutant gene C282Y. I have not heard of Lactoferrin???? What are the side effects? Have you heard of getting chelation therapy?

I would like to hear from you again. Wonderful to connect with people with this disorder.

I think I caught this fairly early in life, however , I do not believe what doctors tell me , ie, that the iron is not in various parts of my body. ??? what do you think

Marion
marion westoll
Posted: Wednesday, November 18, 2009 1:59:52 PM
Rank: Newbie
Groups: Member

Joined: 11/17/2009
Posts: 3
Points: 9
Location: canada
HI again, I am seriously going to check out chelation therapy for hemachromatosis.

regards, Marion
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