Posted , 4 users are following.
I have iron storage still working on my body especially my bones and joints and brain. I have a lawsuit but my attorney hasn't found a real expert. Could someone guide me to someone who Really knows about this illness. It has ruined my life. Thanks
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sheryl37154 franklin_41429
Posted
My dr took 9 years to diagnose my haemochromatosis after the onset of severe symptoms. Well, actually, she did not diagnose it. One day my hips broke up and osteo surgeon explained that my blood was so thick with iron that it could not get into the fine capillaries that feed the bone, and the bone died.
I had also had constant left side chest pain for 12 months before this diagnosis. My fatigue was so severe I was staggering and slurring while I forced myself to keep working. Over the 27 years since onset I now have a lot of health issues due to late diagnosis and treatment.
Google did not exist until the year I was diagnosed or I would have found the solution myself. My dr was in denial because, she admitted, that I did not LOOK like I had it. She was relying on end result symptoms to diagnose (e.g. cirrhosis/cancer of the liver, etc.)
Then my son was tested and found to have compound heterozygous C282Y/H63D, hence from his father who was found to be homozygous H63D. I am homozygous C282Y - the most aggressive one.
There is not a lot that one can do about dr's incompetence. We can only now educate ourselves and advocate for ourselves, and perhaps educate the drs on the way about this metabolic disorder. Haemochromatosis organisations work to create awareness not only to patients but to drs. We have to support and assist them to do so. There have long been campaigns to get governments to agree to population screening. While there is a claim that that is too expensive (it is not), the cost of it is far far less than the cost of treating the health issues resulting from late diagnosis.
Search for and read Prof Pierre Brissot of Rennes, France. He and his team are most prolific researchers in this field. Prof John Crowe of University College Dublin is also a high authority on haemochromatosis. There are many around the world. Prof Paul Adams from Canada. There are excellent ones in Australia.
Join your country's haemochromatosis association and attend their conferences when you can as they often have these researchers as keynote speakers.
Good luck with it.
lynnsk1 franklin_41429
Posted