Comments on: And the Damage Done: Hemochromatosis recap

By: Mary

Mary — Tue, 03 Apr 2012 22:04:55 +0000

I have just been told that my sister has been diagnosed with Hemochromatosis and that all us sisters have to be tested. Coinsidentily i was told about 25 yrs ago that i may have this condition but did not follow it up. I have over all these years suffered extream pain in my feet and legs, so bad that i sometimes find it almost unbearable and brings me to tears. Last year i took a TIA and thought i was going to die but thankfully have recovered and am one various medications. Reading the symstoms of this conditions really frightens me as i can relate to a lot of them but am so afraid to be tested in case it turns out i have it. My biggest issue is that how could i have been diagnosed 25yrs ago and am only now that this has been put in front of me that i am having to consider being tested. Is this timescale common/possible…

By: Stacia

Stacia — Tue, 20 Dec 2011 02:52:50 +0000

I was diagnosed last yr. My Rhuematologist tested me after seeing abnormal blood tests referring to iron while checking for arthritis. I guess my age (38) was young for arthritis and it just so happens that she had another identical patient.
I am a single mom, I work about 45 hours a week and come home and clean and do all that needs tending. But I am tired a lot. I can explain this by lack of sleep and busy but I am gaining weight and I eat so healthy and work out 3x a week. I have always had decreased libido, and memory is not so good.
I need to do something about the weight thought… Anyone heard of this?

By: Michele

Michele — Thu, 15 Dec 2011 14:02:33 +0000

Hello,

I am a 41 year old just diagnosed last week with hemochromotosis. The only reason I know was just luck and a little career success. My job promotion allowed me access to executive health care and annual physicals that are quite thorough. I kept noticing that my iron count was high. And I mean I noticed, not my doctor… Within the last year, my parents were in Ireland and heard that a cousin had the disease so I put two and two together after my last physical and went to hematologist. I am saved (at least i hope no damage and will find out with mri soon) but only due to my own persistance, linking the dots and having friends in the medical field. If its so common, why is it missed and why not just test for it in high risk groups to avoid all the pain suffering and costs. I never heard of hemochromatosis until my dad mentioned it. It needs more press………thanks!

By: Tori Tassone

Tori Tassone — Thu, 08 Dec 2011 10:53:48 +0000

Hi, I was diagnosed with HH a year ago, after my sister was confirmed to have the condition. At 42 years of age, while my iron levels are all at the high end of normal, it appears that I do not have a loading problem as yet. I do ,however, suffer joint pains in my wrists, right knee, and left shoulder. I have tried to ignore these pains, but they don’t seem to be going away. It panics me a little as I have enjoyed a very active life, exercising reguarly and working as a nurse in a very physically demanding job, to support my family, and pay for my kids’ schooling. Do you know if joint pain can be a feature even without a loading problem? I’m terrified of what could happen to my body and my life. I need to keep working for at least the next ten years until my kids are finished school! HELP!

By: Racheal

Racheal — Thu, 22 Sep 2011 23:01:11 +0000

I just want to say thank you for your blog. My husband was diagnosed about 2 years ago and it has been a struggle to get any doctors to listen to what he is going through they all keep saying this is an old persons disease and minimizing all his symptoms as if they mean nothing I am so frustrated and do not know what to do anymore!!!

By: Karen

Karen — Sun, 08 May 2011 15:43:11 +0000

Hi – My heart goes out to you. Your blog is a GodSend to me, because I have and am still suffering from everything in your blog.

The most upsetting response to this whole situation is having “medical professionals”, who are not familiar with HH, tell you that it’s all in your head.

I feel like I have been handed a death sentence with no appeals available and there is not a night that goes by that I don’t pray that God just let’s me go. But, since I am still here tells me that God is not done with me yet.

I refuse to go to a “medical professional” because of the minimization of the illness and them almost killing me through overmedications and unnecessary tests. So, as bad as this “condition” is, my heart lightens up a little when I read blogs like this, because I know I’m not alone.

Why does everyone refuse to help you? Why do “professionals” (i use this term loosely) minimize this tragic condition? Where do I go from here?

I’m just lost and need to vent, so thank you for posting your blog.

By: Aimee

Aimee — Wed, 04 May 2011 01:26:21 +0000

Hi Stephen and Chey…I would love to hear your thoughts on my symptoms that I list in my blog. I was the youngest diagnosed in my area over 12 years ago, and I am just now suffering from all of the joint pain. I thought I was going crazy as I am only 36, and no one could link it to my HH. No amount of research I did added up to my symptoms until I found Hashimoto’s disease. It took me 10 months to convince a doctor that my thyroid was having problems and that they needed to treat me. Thanks again for this blog.