Neonatal Hemochromatosis Information Center (NHIC) Are you facing NH? Call us at: 407-829-4488 Email: mail@americanhs.org
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The American Hemochromatosis Society dedicates this web site in loving memoryof the children who have lost their lives to Neonatal Hemochromatosis (NH)www.neonatalhemochromatosis.orgMedical Definition:Neonatal
Hemochromatosis (NH) is a rare gestational condition in which iron accumulates
in the liver and
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Welcome to the Neonatal Hemochromatosis WebsiteThis website was created to help those families affected by Neonatal HemochromatosisImportant information--New Hope, New Treatment*: Dr. Peter Whitington hypothesized more than 10 years ago that NH is an immune-mediated gestational disease. He proposed to treat pregnant women whose previous baby was affected by NH with high-dose intravenous immunoglobulin (IVIG), a treatment known to be successful to prevent recurrence of other severe alloimmune gestational diseases. Because the disease was considered to be extremely rare, Dr. Whitington had to recruit subjects for this study from across the US and abroad. The treatment of 15 women in five countries was reported in Lancet in 2004. All of the women had pregnancies that proceeded to live births, all the babies survived and all developed normally, thus supporting the hypothesis that the disease is caused by an alloimmune mechanism. As a result of this publication, increased numbers of affected women have been referred. Indeed, Dr Whitington reported recently that he is receiving an average of a new referral per week. The 44th baby of women treated on his protocol was recently born and 8 women are under treatment. All babies born with gestational treatment are now healthy. He will top 50 in early spring at which time he'll write a follow-up paper.
Dr Whitington continues to do research to determine the precise pathophysiology of NH. Most recently he has reproduced NH in a mouse model and has demonstrated that affected women's sera contain antibodies that can directly kill fetal liver cells. Work ongoing has a goal of cloning the fetal liver protein targeted in NH in order to develop an immunoassay to detect the target antibody in women at risk of having affected babies. He would like to acknowledge the women who have had affected babies and their families whose hardships and sera make this work relevant and possible.
The American Hemochromatosis Society (AHS) ( www.americanhs.org ) and the Neonatal Hemochromatosis Information Center www.neonatalhemochromatosis.org ) have been supportive in making this happen. If you have interest in participating in his research, Dr Whitington can be contacted at p-whitington@northwestern.edu or call: 773-880-4643.
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This site was last updated 1/17/2009