Hereditary Hemochromatosis

Please download to get full document.

View again

of 3
26 views
All materials on our website are shared by users. If you have any questions about copyright issues, please report us to resolve them. We are always happy to assist you.

Download

Document Related
Document Description
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. The
Document Share
Document Tags
Document Transcript
  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 beendiagnosed with it. Therefore; while I have spent many hours researching information on HH, please realize that the advice & links presentedhere should be discussed with your family physician! I applaud the many doctors who are willing to maintain an open & communicativerelationship 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 thesymptoms or problems that may be associated with HH. These are resources, urls, articles, etc. which I have located in myresearch on HH. I have attempted to somewhat categorize them & place them under their corresponding symptoms/problemsin this table. If you click on these sections, [they should be highlighted in orange] it will take you to resources that I have foundwhich 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! HEARTChest pain, shortness of breath, fatigue, arrythmias [irregular heartbeats] rapid pulse, cardiomegaly,    congestive heart failure [CHF]heart attack < 50 yrs. oldLIVERCirrhosis, [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 specifictothe   PANCREASCancer of the pancreas, insulin resistance, diabetes, bronze diabetes ENDOCRINE specificto theREPRODUCTIVESYSTEMHypogonadism, decreased libido, impotence, irregular menses, early menopause, infertility, sterilityENDOCRINEspecific toTHYROID &/orPITUITARYHypothyroidism, always feeling cold, hair loss or early graying, fatigue***********Psychological disorders, depression, confusion, memory lossJOINTSArthritis & pain in the joints, often seen in the knees, hips & thefirst 2 fingers,  joint replacements, CPPD, psuedogout, RAIMMUNE SYSTEMFrequent infections, flus, colds, weakened immune system.Info. on the Vibrio vulnificus virus found in seafood, which canbe deadly to those with HH.SKINRusty or gray tone to the skin, golden tan color, rashes or skin changes, hair loss, porphyriacutanea tarda [PCT]  In addition to all of the above, it may even be [mis]diagnosed as:Chronic Fatigue Syndrome [CFS]Fibromyalgia [FM]Lupus, LeukemiaRheumatoid Arthritis[RA]Depression Click here to read more about HH associated withfatigue, 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 pertainingto these topics as associated with iron overload or HH. Are the eyes & ears affected? Other HH groups, organizations Basic stats & information Other metals, copper, etc. Blood bank information Phlebotomies, guidelines, supplies Children & HH Radiology, CT scans, MRI's, etc. CME, Medical resources, hospitals Searches on hemochromatosis Dietary considerations, alcohol Secondary iron overload DNA testing labs, HFE articles Thallassemia, Iron loading Anemia Hepatitis & Iron, NASH To screen or not? The pros & cons Lab tests, meanings, etc. TV, Magazine, Newspapers, Books Other cancersPATIENT 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 & realizethat 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 aboat, 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 lowhgb. 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:IronFerritinTotal 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. recommendationsIMPORTANT: We must educate ourselves on this condition & become active participants in our healthcare. You should get a 3 ring binder & keepcopies of all labwork, test results, etc. for your reference. Know what your numbers are & what they SHOULD be!! Too often, even those in themedical 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 Ihighly 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! Please click on the links below to read ....ABOUT OUR FAMILY: How Our Family Is Affected 3 of us have 2 HH genes, 3 of us are carriers-6 out of 6 of us are affected! [This is just in our immediate family of me, myhusband & our 4 children.] Like Father, Like Son Our son started phlebotomies at 7 yrs. old. He is now 13. Young children CAN  have iron overload!  Don't delay getting your children tested! 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 onlinesupport group associated with the American Hemochromatosis Society. [AHS]
Search Related
We Need Your Support
Thank you for visiting our website and your interest in our free products and services. We are nonprofit website to share and download documents. To the running of this website, we need your help to support us.

Thanks to everyone for your continued support.

No, Thanks