Posts

Showing posts from 2011

Hemochromatosis Blood: An untapped national resource?

The use of blood taken from hemochromatosis patients is a hot topic right now over on the Hemochromatosis Facebook page. The are wide discrepancies in how medical facilities handle hemochromatosis blood.

So we want to highlight some useful resources that can help spread awareness of the fact that hemochromatosis blood is fine to donate and bank, just like "normal" blood:

Iron Disorders Institute info sheet on use of HHC blood (printable PDF)
Centers in your state that use hemochromatosis blood

The first item is a great way to educate people on this topic and it is easy to print out. So why not download it, print it up, and drop off a few copies at your doctor's office, health clinic, or blood donation center? The more people who know hemochromatosis blood can be used, the stronger our country's blood supply will become. Consider this:

Hemochromatosis patients give a lot more blood than the average citizen, particularly in the early stages of treatment.
You can't "…

Deadly Ignorance: 13 million Americans have hemochromatosis, but most have never heard of it

Can you die of ignorance? You surely can. Ignorance of hemochromatosis kills countless thousands of Americans every year. Just how ignorant are we of this deadly genetic disorder? Here's a quick test: Have you ever heard of one or more of the following genetic conditions:

Cystic fibrosis • Down syndrome
Sickle cell disease • Haemophilia

Guess what? They are all rarer than hereditary hemochromatosis! Maybe you don't believe me, so you Google "most common genetic disorders" and you find some lists and hemochromatosis is not on them. Why is that? The lists are wrong! That's how widespread the ignorance is.

The fact remains, well documented, that hereditary hemochromatosis or genetic haemochromatosis for our British readers, is carried by at least 1 in 10 people in America and probably at least as common in Britain.

Want to get academic about it? The number cited by the Iron Disorders Institute, a non-profit with many respected physicians on its board, is 0.043 or 43 peop…

Cirrhosis, Alcohol, Ignorance and Prejudice: Welcome to the dark world of hereditary hemochromatosis

Imagine the shock of getting a call from the intensive care unit of your local hospital telling you that your brother has been admitted. The doctor says your brother is delirious and combative and "in the throes of advanced alcoholism." Furthermore, he has cirrhosis of the liver, internal bleeding, and ketoacidosis—a medical emergency in which a shortage of insulin can lead to coma or death—from newly diagnosed diabetes.

If you've never thought of your brother as an alcoholic such a call could be both shocking and disturbing. Of course, the story gets even more worrying if your brother turns out not to be an alcoholic. But such is the story told in this excellent Washington Post article about an almost fatal failure to diagnose hemochromatosis.

Several things struck me when I read this article, in addition to feeling terrible for Jeff Williams, the subject of the story, and his family, who are now living in the shadow of hemochromatosis. For one thing there is an amazing c…

Welcome to Ireland President Obama: How's your hemochromatosis?

Image
President Obama arrived in Ireland today and although the main focus of his visit is diplomacy, he is also set to connect with his Irish roots. He will visit the village of Moneygall in County Offaly, home to just under 300 people, some of whom are distant relatives of the President (as reported by Christian Science Monitor).

Which brings me to the point of this blog post: An Irish heritage can be a wonderful thing, but it can also come with a down side, one that goes by the name of hereditary hemochromatosis, a.k.a. Celtic Curse. Although a lot of websites say that hemochromatosis is rare among people of African descent, this potentially fatal iron disorder is not that rare in people who self-identify as black and/or African American.

So the Celtic Curse blog would love to see President Obama get tested for mutations of the hemochromatosis (HFE) gene and share the results of his test as a way to raise the world's awareness of this widely under-diagnosed and potentially…

New Hemochromatosis Links, Blogs, Interviews, Discussions

This post is a quick update to let you know we're still here and still working on raising awareness of hemochromatosis, even though the twin demands of the "day job" and coping with HH have been taking up most of our time (that's why there's no fancy image to go with this post).

Fortunately, we are not alone, and hemochromatosis sufferers don't have to go it alone. There are places to turn for advice, insight, support, and maybe even a smile or two. Places like My Dog's Teeth, a blog written by Cristi-Rae Baird, a young Canadian HH patient. Here are links to Cristi's site and several other HH-related places you might not know about. They are all worth checking out.

The My Dog's Teeth blog: Cristi's personal account of living with hemochromatosis (and a dog). Cristi's in-depth interview with Jillian is well worth reading.
The MisAdventures of Bad Boy Kimball: a personal blog from Steve Kimball, writing about coping with hemochromatosis. My wif…

Protect Genetic Testing: Petition the FDA

A simple genetic test is all it takes to know if hereditary hemochromatosis, the most common genetic killer in America, is in your genes. Your doctor can order this test or you can order the test yourself, direct from a reputable testing service. But that may change.

The Food and Drug Administration is seriously considering making some health-related genetic tests prescription-only. In other words, you would need your doctor's permission to get this and other tests. In some cases the results would go to your doctor, not you. We don't think such restrictions are needed. We think they would be detrimental to the public good and increase the cost of health care.  So we have organized a petition to express these views to the FDA. If you agree, please sign the petition.

Why Consumer Access to Genetic Tests Matters to You

Sadly, many doctors are overworked these days and simply lack the time it takes to stay abreast of the latest developments in genetics. We feel tremendous sympathy fo…

Comments to the FDA Meeting on Consumer Access to Genetic Tests

Image
The following comments were submitted to the Food and Drug Administration by Stephen Cobb, in preparation for the planned meeting of the Molecular and Clinical Genetics Panel of the Medical Devices Advisory Committee, said meeting to be held March 8-9, 2011, to discuss issues surrounding direct-to-consumer access to genetic testing.

FDA Comment Tracking Number: 80bfb28b

These comments represent my opinion as a consumer and as someone whose life has been permanently and negatively impacted by a genetic condition.

I think it would be a serious setback for public health in America if you decide to stop responsible companies such as 23andMe providing their current genetic testing services direct to consumers. I have used the services of 23andMe and have been impressed by the level of care and responsibility the company exercises in presenting health-related test results.

I see no benefit in requiring a doctor's prescription to get such tests or in placing a doctor between me and the facts…

Let's Defeat Hemochromatosis in 2011

Defeat hemochromatosis? In one year? Surely that's impossible? Well, the key to defeating hemochromatosis is making everyone aware of the condition. I'm talking doctors, nurses, family, friends, the person seated next to you the next time you fly. Hemochromatosis accounts for more cases of diabetes, arthritis, heart disease, liver disease, depression and suicide than anyone has so far cared to calculate. Why? Because not enough people know enough about it.

So how about this: You are one person, but this year you resolve to tell ten people about hemochromatosis, and you ask each of them to tell ten people. We can call it the 1+10 program, and 1+10=11, and this is 2011. By the time 2012 rolls around the world could be as aware of hemochromatosis as it is of cystic fibrosis (a terrible genetic condition, but one which is far less common than hemochromatosis).

On a more personal note, one of the many unwelcome things that hemochromatosis can do to a person is slow them down. Would y…