HEMOCHROMATOSIS: INFORMATION SORTED ON SUBJECT

Add LINK/ARTICLE or report a dead LINK

ARTICLES (scientific and magazines)

LINKS DIFFERENT COMPLAINTS IN HEMOCHROMATOSIS

This list is not complete and the author does not take responsibility for the content of the information given. Allways contact your doctor!!!

Maillists/Newsgroups (talking to doctors and other patients) about hemochromatosis
FAQ on Hemochromatosis
Diagnosis of hemochromatosis
Management of hemochromatosis
Famous people and hemochromatosis
Phlebotomy
The history of bloodletting
Blood donation
Possible (but not all nessesary) medical procedures in hemochromatosis
Hemochromatosis Clinics
DNA-testing
High T.S.% or ferritin: secondary causes
Heterozygotes
Compound heterozygotes
Hereditairy hemochromatosis without mutations
Diet, Vitamins and nutrition
Iron deficiency
Ferritin
Iron metabolism, etc.
Non Transferrin Bound Iron (NTBI)
Iron absorbtion
Full articles from scientific magazines online (free)
Iron supplementation
Different lab-tests
Images (of the liver) in hemochromatosis
Juvenile Hemochromatosis
Children and Neonatal Hemochromatosis
Insurance
Screening for hemochromatosis
Other information on Hemochromatosis
General information for health issues
Wilson's disease
Animals and iron overload
Links on liver diseases
Secondairy Hemochromatosis
Deferiprone (L1) and Desferal
Cholesterol
Alcohol
Smoking
Aids and iron


Maillists/Newsgroups/chat, etc. on hemochromatosis

Excess Iron List: Very active maillist by the Iron Disorders Institute
A blank message to these addresses performs the following:
ExcessIron-on@mail-list.com gets you on the list.
ExcessIron-off@mail-list.com gets you off the list.
ExcessIron-switch@mail-list.com toggles you to/from the fancy digest version.
ExcessIron-vacation@mail-list.com toggles you to/from the vacation list.
Post your message to the list by sending it to ExcessIron@mail-list.com
To contact the list owner, send your message to ExcessIron-list-owner@mail-list.com

* Families HHelping Families Circle: online support group created & supported by the AHS

* Jim Barbers Iron Overload maillist

* Iron Overload Disorder Support Group Online

 

Newsgroups (read messages online)

* Donate to the Bloodbank of Jim Barber

* Newsboard. from the Canadian Hemochromatosis-society --> go to their links--> hemochromatosis News board!

* Spanish Newsgroup

* Chatting about hemochromatosis at Yahoo (not very active)

* News Group alt.health.hemochromatosis: not very active

* German discussion-list on hemochromatosis

* Another German newsgroep


FAQ on Hemochromatosis

* FAQ on hemochromatosis: from the CDC

* FAQ on hemochromatosis: part 1: AHS

* FAQ on hemochromatosis: part 2: AHS


Diagnosis of hemochromatosis

* Diagnosis of hemochromatosis: Annals of Internal Medicine 1 dec. 1998

* How to get a diagnosis, step by step for patients: AHS

* Funny story of a pathalogist making a diagnosis


Management of hemochromatosis

* Management of hemochromatosis: Annals of Internal Medicine 1 dec 1998

* Desferal: protocol

* Desferal: general information


Famous people and hemochromatosis

* AHS: Wishing Upon A Star....Do You Know A Celebrity with HH?

* Beethoven and hemochromatosis?

* Was Beethovens cirrosis due to hemochromatosis?

 


Phlebotomy

* Guidelines for Phlebotomyhemochromatosis

* A letter on phlebotomy and hemochromatosis (with ordering information for vacuum bottles)

* Information on Electrolytes and phlebotomy

* Phlebotomy instructions

* The Phlebotomy Bookstore (for your doctor/nurse)

* Phlebotomy: Southern California Phlebotomy training!!!

* The unofficial phlebotomy homepage

* Fun with Phlebotomies: Ironman

* Phlebotomy exams, etc.

* Virtual phlebotomy

* The drawing room: a place for phlebotomists to discuss phlebotomy

* Phlebotomy, facts and fun

* FAQ Phlebotomy, Calgary General Hospital

* Phlebotomy education from Learn Well Resources

* Blood collection: routine venipuncture and specimen handling


Blood donation

* (Abstract) "Blood should be used in Norway"

* (Abstract) Phlebotomy, blood donation, and hereditary hemochromatosis. (apr 2001)

* (PDF) Severity of iron overload in hemochromatosis: effect of volunteer blood donation before diagnosis; January 2001

* Draft guidelines for blooddonation from the FDA (dec. 2000)

* Blood Shortage Remedy Is Found, But Blood Banks and Fed Resist It: Probe Newsletter

* AHS: Bloodbanks and donation

* Australian Bloodbanks allow blood from haemochromatosis-patients

* Use of blood and article from Ann Landers on the subject of blood donation (july 1 2000).

* Transfusion: september 1999 (PDF): Use of blood therapeutically drawn from hemochromatosis patients.

* Transfusion: june 1999 (PDF): A survey of phlebotomy among persons with hemochromatosis.

* Transfusion: june 1999 (PDF): Hemochromatosis probands as blood donors.

* Transfusion: june 1999 (PDF): Hemochromatosis and blood donors: a perspective.

* Transfusion: june 1999 (PDF): Blood from patients with hereditary hemochromatosis--a wasted resource.

* Transfusion with blood from people with HFE-gene mutationsLancet, 31 july 1999Article in PDF

* 1998 Committee explorers use of blood from patients with hemochromatosis

* Abstract: Eligibility and exclusion of hemochromatosis patients as voluntary blood donors; Can J Gastroenterol 1998 Jan-Feb;12(1):61-3

* Discussion on Blooddonation in the US 04-99 SUMMARY

* Discussion on Blooddonation in the US 04-99: Full text

* Discarded blood could ease shortage (Reuters press-release: 18 january 1999)

* CNN Blood banks throw out blood from iron overload patients

* CNN.com - Evidence suggests that giving blood has health benefits - April 26, 2000

* Throwing out good blood

* Donating blood reduces haert-risk: Reuters, 9 september 1998 allso see Heart

* Abstract: Blood donations and risk of coronary heart disease in Men.: Circulation 2001 Jan 2;103(1):52-7

* Possible association of a reduction in cardiovascular events with blood donation: 1997

* American association of blood banks

* Taking a small sample of blood: video --> 8000K!!!!!!!!


Possible (but not all nessecary) medical procedures in hemochromatosis

* Management of hemochromatosis: Annals of Internal Medicine 1 dec 1998

* Cat Scan/CT Scan by MedicineNet

* No liverbiopt in most hemochromatosis patients needed! BK

* Liver Biopsy by MedicineNet

* Electrocardiogram (EKG) by MedicineNet

MRI
* Quantification of liver iron concentration with magnetic resonance imaging by combining T1-, T2-weighted spin echo sequences and a gradient echo sequence; Neth J Med 2000 Apr;56(4):133-7

* MRI (1995) for non invasive detection of low levels of iron

* Medline: MRI and hemochromatosis

* MRI-scan by MedicineNet

* Technical MRI information

Hemochromatosis Clinics

* Iron Overload Clinic at the University of Washington Medical Center

* Pittsburg: UPMC Hemochromatosis Clinic

* Saint Louis University

* University of Pennsylvania

* Rochester University Medical Center See allso page with articles from magazines!


DNA-testing:

* All the mutations (possibly) involved in hemochromatosis (only c282y and h63D are relevant at the moment (jan 2001)

* February 2000: Iron beware: A common HFE gene polymorphism may prevent the accurate molecular diagnosis of homozygous hemochromatosis in low-risk, but not high-risk groups Hepatology Article in PDF

* February 1997 Hemochromatosis and "HLA-H": Definite! PDF!Hepatology * PDF: HFE mutations analysis in 711 hemochromatosis probands: evidence for S65C implication in mild form of hemochromatosis; Blood 1999 Apr 15;93(8):2502-5

* Medline: S65C mutation

* Kimball Genetics

* Health screen America offers DNA-testing for consumers

* Will Your Genes Prevent You From Getting Health Insurance?

* Michigan state University DNA-testing

* Family-guide about the genetics of hemochromatosis

* DNA-test (Clin labs))

* ARUP-lab

* DNA-lab Chicago

* Genetic testing

* Genetic test

* Medical summary (very technical)

* ITxM Laboratories

* H63D and C282Y bk

* Family Screening: Canadian Hemochromatosis Society

* DNA-gentest (and licence)


High T.S.% or ferritin: secondary causes

* Secundary Iorn Overload by the Iron Disorders Institute

* Hyperferritinemia (abstract)

* Total iron-binding capacity and serum transferrin determination under the influence of several clinical conditions


Heterozygotes

* Article showing heterozygous men have higher T.S.% (feb 2001)(PDF!)

* Biochemical expression of heterozygous hereditary hemochromatosis (PDF!)

* PDF: Heterozygosity for a hereditary hemochromatosis gene is associated with cardiovascular death in women: 1999 Sep

* PDF: Increased risk of acute myocardial infarction in carriers of the hemochromatosis gene Cys282Tyr mutation : a prospective cohort study in men in eastern Finland; 1999 Sep

* Update: CONCISE REVIEW: Hereditary Hemochromatosis (heterozygotes, red)--A Risk Factor for Cardiovascular Disease

* The C282Y mutation of the hemochromatosis gene HFE

* Hemochromatosis in Heterozygotes: NEJM;dec 1996


Compound heterozygotes

* Compound woman and iron and T.S.%


Hereditary hemochromatosis without mutations

* August 1998: Clinical Characteristics of Hereditary Hemochromatosis Patients Who Lack the C282Y Mutation Hepatology Article in PDF

* May 1999: Inherited HFE-Unrelated Hemochromatosis in Italian Families xxx Article in PDF

* Abstract: Nonexpressing homozygotes for C282Y hemochromatosis: minority or majority of cases?: Mol Genet Metab 2000 Sep-Oct;71(1-2):81-6

* Hereditary Hemochromatosis in Adults without Pathogenic Mutations in the Hemochromatosis Gene NEJM 1999; 341: 725-732


Diet, Vitamins and nutrition

* Articles about HH and diet (Introduction in Dutch)

* Advice on supplements for hemochromatosis (very commercial!)XXX Comments on lef.org article

* Diet and other lifestyle advises: Australian Haemochromatosis-Society

* Blokking iron absorbtion by drinking tea!

* Food sources of Iron: Mayo Health

* Why fortify foods? * iron absorption

* About supplementation for people with hemochromatosis. It is very commercial, but there is some usefull information between the lines. Check all the information with a dietist or doctor or ask the newsgroup!!!

* Nutrition

* Oysters

* Don't eat raw seafood when you have Hemochromatosis

* FDA-web site: search Hemochromatosis and find Vibrio fulnificus!

* Oysters

* Cuppa a day is live saver (tea)(BBC: 5 nov. 1998)

* Iron overload from drinking water and diet?! Medicinenet

* Tea may benefit blood vessels

* Milk Thistle

* Vitamin E

* Vit C: Annals of internal medicine

* Kellogg's is dangerous for your health

* Genetically engeneered rice is iron fortified

* Iron and tea