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HEREDITARY HEMOCHROMATOSIS

Hereditary Hemochromatosis,[HH] is a genetic condition of iron overload affecting approximately 1 out of 200-300 people, with 1 in 8-10 people being carriers.  It is 100% fatal if not diagnosed early & treated aggressively, yet with early diagnosis & treatment, one can expect a normal life span.


Disclaimer:
I am NOT a physician. I am a registered nurse, and a wife and a mother, with a special interest in HH, due to the fact that my family has been diagnosed with it. Therefore; while I have spent many hours researching information on HH, please realize that the advice & links presented here should be discussed with your family physician! I applaud the many doctors who are willing to maintain an open & communicative relationship with their patients, in order to develop the best healthcare plan possible!
Cindy Munn RN

 


In this table you will find many of the organs/systems that may be affected by  Hereditary Hemochromatosis, as well as the symptoms or problems that may be associated with HH. These are resources, urls, articles, etc. which I have located in my research on HH.  I have attempted to somewhat "categorize" them & place them under their corresponding symptoms/problems in this table.  If you click on these sections, [they should be highlighted in orange] it will take you to resources that I have found which are related to that particular topic.

If anyone finds any missing links, or knows of a resource which I might want to add to my list, please let me know!

HEART

Chest pain, shortness of breath, fatigue,
arrythmias [irregular heartbeats] rapid pulse, 
cardiomegaly,
congestive heart failure [CHF] 
heart attack < 50 yrs. old

LIVER

Cirrhosis, [even if you are not a drinker!] 
 liver cancer, hepatoma, 
elevated liver enzymes, liver failure, 
abdominal pain or tenderness, 
especially in the right side.

ENDOCRINE specific to the PANCREAS

Cancer of the pancreas, 
insulin resistance, diabetes, "bronze diabetes" 

ENDOCRINE specific to the REPRODUCTIVE SYSTEM

Hypogonadism, decreased libido, impotence,
irregular menses, early menopause,
infertility, sterility

ENDOCRINE 
specific to 
THYROID &/or PITUITARY
Hypothyroidism, always feeling cold,
hair loss or early graying, fatigue
***********
Psychological disorders, depression,
confusion, memory loss

JOINTS

Arthritis & pain in the joints, often seen in the knees, hips & the first 2 fingers, 
joint replacements, CPPD, psuedogout, RA

IMMUNE SYSTEM  Frequent infections, flus, colds, 
weakened immune system. 
Info. on the
Vibrio vulnificus virus found in seafood, which can be deadly to those with HH.

SKIN

Rusty or gray tone to the skin, 
golden tan color, rashes or skin changes, hair loss, porphyria cutanea tarda [PCT]

In addition to all of the above, it may even be [mis]diagnosed as:  

Chronic Fatigue Syndrome [CFS]
Fibromyalgia [FM] 

Lupus, Leukemia
Rheumatoid Arthritis[RA]
Depression

Click here to read more about HH associated with
fatigue, weakness, muscle pain, depression. 

What does iron do to the BRAIN?
Alzheimers or Parkinson's, strokes, seizures

Click on the individual box to see more information pertaining 
to these topics as associated with iron overload or HH.

PATIENT STORIES & websites: 

If you would like to share your story &/or HH website with others, please send it to me with permission to post it to my site.  It is very helpful to read the experiences of others & realize that you are not alone!

Be sure to visit the link in this section about a man who is making a trip around the world in a boat, in his efforts to bring awareness to HH.

It is very important that the proper tests are ran to check your iron status.  A hemoglobin [hgb] level alone is not sufficient & patients may even have a low hgb. level, yet be iron overloaded.  A low hgb. should always be evaluated to find the CAUSE of the anemia before assuming that it is from iron deficiency & routinely treating with iron.  Do NOT ever take iron without first knowing your true iron status!

The correct lab tests that you should ask your doctor to do are:

  • Iron

  • Ferritin

  • Total Iron Binding Capacity [TIBC]

  • Transferrin Saturation[TS]

These should be done in the morning hours, after an overnight fast. There is also a genetic test now available that you can do in the comfort of your home, without needles!  More information on it can be found in the links below.


Click here for a quick overview of DIAGNOSIS, TREATMENT, DIET & misc. recommendations


IMPORTANT:  We must educate ourselves on this condition & become active participants in our healthcare.  You should get a 3 ring binder & keep copies of all labwork, test results, etc. for your reference.  Know what your numbers are & what they SHOULD be!!  Too often, even those in the medical field are not up-to-date on the diagnosis or proper treatment of HH.  Read all that you can find on HH!  Below are two articles, which I highly recommend that you print out for YOUR benefit as well as for sharing with your doctor[s]!  These include guidelines to follow for the diagnosis & treatment of HH.  

MCV as a guide to phlebotomy therapy for Hemochromatosis   [a pdf file]

Annals of Internal Medicine information available on HH here including: 
            Diagnosis & Management of HH   

                      Be sure to see this!  It is great for printing out to help educate your doctor & families on HH!

NOTE:  There are many files/abstracts/articles etc. on my webpage which are in pdf format. 
You must have Adobe Acrobat Reader to open these. 
If you do not have this installed, you can click on the icon & download it for free.  

 

Click on this box for a simple handout, which can be printed, to help you to inform others of the need to be tested for HH.  This covers the symptoms of HH, the genetic & clinical testing needed, as well as treatment, dietary considerations, etc. When printed out, it is only 1 page, front & back, so this is perfect for sharing with all of your relatives, when HH has been diagnosed in the family.

 

Please click on the links below to read ....ABOUT OUR FAMILY:


AHS ONLINE SUPPORT GROUP!

An online support group is now available for those who may be interested called Families HHelping Families circle! The FHHF is an online support group associated with the American Hemochromatosis Society.  [AHS]


 Shortcut URL to the FHHF page: 
http://groups.yahoo.com/group/FHHF


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I hope that you will take the time to leave your name in my guestbook! If you would like to share your HH story with us, please feel free to leave it in the guestbook or email me! By sharing our experiences, we can help each other!

This guestbook was added 7-1-02.   

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last updated 6/6/02