Each time I blog about hemochromatosis I hear from people affected by this daunting and life-threatening condition. Often these people are frustrated with doctors failing to recognize the condition and with the slow pace of diagnosis and treatment. Fortunately, if you are one of these people, there is a supportive community you can join, online, via email.
It's called The Excess Iron List, and it includes people from all over the world, people who are dealing with this condition, supporting each other through sharing their experiences. But before I give you the link for this, I want to point out that it is an email discussion list, not an online forum or chat room. That makes it one of the oldest means of getting together over the Internet.
If you haven't used one of these lists before it can seem a bit strange at first (just to be clear, when you join, you are NOT being put on a public mailing list to get unsolicited information--and the list is moderated by a person, not a machine). The basic operations, like joining the list or leaving it, are carried out by you sending blank email messages to a special email address. For example, to join you send a blank email to: ExcessIron-on@mail-list.com
Fortunately, when you do that, you will get a reply that explains how the system works. The big payoff is being able to share with other people who have an interest in iron overload. So, if you're interested click here for details of The Excess Iron List. The page is hosted at the Iron Disorders Institute, a reputable source for information about hemochromatosis.
It seems that most doctors don't know much about hemochromatosis.
ReplyDeleteThe really sad part is that they just aren't interested in learning.
Have you ever read a book called "The Bronze Killer"? Check it out on Mobipocket.com or on a website www.dromedarisbooks.com which has a special page dedicated to Hemochromatosis. I have often wondered where my family - and numerous others - would be today if the writer of this book had not devoted 30 years of her life to making the world aware of HH
ReplyDeleteI was so fortunate! My doctor is seriously like "House"...I went into him for my excessive night sweats (at the ripe age of 24). I thought I was in perfect health...working two jobs, going to Univ, active and happy...turns out I had a silent killer working in my body.
ReplyDeleteMy doctor tested my ferritin levels 3 times to make sure...than sent blood work to test my liver and genetics...turns out I have HHC.
I am not scared anymore because I have searched for resources on the internet.
Thanks for your blog!
My Uncle died in 1983 from liver cancer as a result of untreated Hemochromatosis. My father and brother found out relatively early that they had it.
ReplyDeleteI was told for years by several different primary care physicians that I did not have it. I had three surgeries for unexplained problems. Calcium deposits in shoulder tendons that kept me from raising my arm...Hysterectomy because I was hemorrhaging for no obvious reason...gall bladdar (no stones) removed because it died and was poisoning my abdomen and other organs.
I had a son in 1985, born with heart, pancreas, kidney and liver problems. He passed away at 6 weeks.
I was treated by one doctor for anemia and advised to take "Iron" pills for over two years.
In 2006, I went on a trip and was having problems walking from severe pain in my hip. I decided to see a hemotologist, just for peace of mind, because so many strange medical problems kept coming up.
Surprise, I had Hemochromatosis. I almost died that year from complications in getting my iron under control. I became ill easy and had several bouts of acute bronchitis and pneumonia. There was liver damage, and joint damage. The liver damage has since recovered and the area has calcified, but I have numerous joints that will never be the same. I have a form of arthritis from the hemochromatosis as well as osteoarthritis. (No one else in my family have arthritis, of any kind, until they're in their 60's or 70's.) I started with bouts of arthritis pain in my 20's, and by my 30's had multiple joints deforming. At 44, when diagnosed with the blood disorder I had several joints, (hip, ankle, back, neck, hands and feet) affected. I just turned 50 this past year, 2012, and sometimes I feel like I'm 99.
Now I take 5 prescription Potassium pills daily in order to keep potassium in my body. It drops too low and I start having spasms and heart palpitations. Muscle spasms are now a continuous problem in my back, neck, legs, feet and hands even when my blood work shows the potassium levels are remaining in normal range. None of the doctors, (2 different Primary Care Physicians, Hemotologist, or Nepherologist) can figure out why this is happening.
Has anybody had this problem with potassium?? Is it related to the hemochromatosis?
I'm actually Very Blessed. I know it doesn't sound go, but it could have been a lot worse. If you have people in your family with this disorder, don't wait for Primary Care Physicians to make a diagnosis. Go see a Hemotologist who is familiar with this disorder. :)
I have recently been diagnosed and I am having great difficulty getting a doctor who specializes in HHC. I live in Ann Arbor, MI a supposed mecca of medicine. Their website list 0 doctors that have that specialty. I have tried to get info from the Iron Disorders Institute and all they have is an answering machine and I have yet to get a call back. I would really like to talk to someone further along the road with this issue. Any experienced HHC patients or doctors willing to speak to me.
ReplyDeleteI am struggling with getting my Ferritin levels down. I am now on my third Dr. One diagnosed my hemochromatosis and then did nothing about it. The second one told me my levels were fine at 200 and gave me no dietary info. I am now going to a Hepatologist
ReplyDeleteand getting a little more info. but mostly by my own reading. I keep hearing that "certain" teas and coffees are better than others for blocking iron intake. Does anyone know what those "certain" teas and Coffees are????