Introducing Hemo-Doc-Stars: doctors who ‘get’ hemochromatosis

by Stephen Cobb on July 26, 2014

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To mark Hemochromatosis Awareness Month this July, 2014, we asked visitors to the Fighting Hemochromatosis page on Facebook to let us know if they had encountered a GOOD hemochromatosis doctor. Why? Doctors who ‘get’ hemochromatosis are hard to find, even though hereditary hemochromatosis is the most common genetic killer in America today. We were pleasantly surprised to get scores of responses, some with rave reviews from patients. So, thanks to those patients who took the time to share their experience, we can now present the first edition of the “good hemochromatosis doctor” list, dubbed Hemo-Doc-Stars.

Click here to download the Hemo-Doc-Stars list in PDF format.

What’s the thinking behind this list? Many people who encounter hemochromatosis complain about poor treatment by doctors and clinics. This ranges from ignorance to rudeness to outright malpractice. In fact, a study by America’s Centers for Disease Control and Prevention found that, on average, it took a staggering 9.5 years from symptom onset for a patient to be diagnosed with hemochromatosis (that’s enough time to kill or cripple a person whose body is rapidly loading excess iron). At first, we thought that naming and shaming bad doctors might help improve things, but on reflection we decided that it was much better to try and raise the bar by recognizing those doctors who treat this condition with the appropriate care and concern, the hemochromatosis rock stars.

The results: 85 doctors made the list as of July 25, 2014. That’s a start. We will update the list from time to time as new recommendations come in. Please see the notes and disclaimer at the end of the list for details of why the list was assembled and by whom. We also listed some resources. Note that the numbering on the list is not a ranking, it just helps to count the entries, which we compiled roughly in the order received. Some comments were edited for grammar and clarity.

Thanks! We’d like to thank everyone who took the time to respond to this question. Your contribution may make all the difference if it helps someone who has been struggling with HH to get the help they deserve.

Please leave a comment and let us know if you find the list useful.

{ 2 comments… read them below or add one }

Judy Anderson July 26, 2014 at 3:54 pm

Yes definitely helpful to share info regarding
Informative docs. My family is being seen at
Father McGivney Cancer Center in New Haven Ct
By two great hematologists Harold Tara M.D. & Bruce Lundberg M.D.
Both excellent docs at Yale New Haven Hospital.

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Mac April 7, 2015 at 4:32 pm

I believe the reference to Dr. Kowley in Seattle should be a Dr. Kowdley.

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