Neonatal Hemochromatosis: Breaking News and Bright Horizons

9:13:18 PM EST
We are very pleased to learn this past week that two of the world's leading authorities and experts on Neonatal Hemochromatosis (NH) have agreed to work with us on public awareness and education about this disease.  Alex Knisely, MD and Peter Whitington, MD, have years of experience with research in the NH field.  They have worked with many families who have been affected by NH and are hopeful that new findings in the field of NH will change the face of NH from one of tragedy to one of hope and happiness.  Their work will enable families in the future to keep their child healthy rather than losing their child to this cruel disease.  Anyone wishing to contact them about an NH child or family, should email me at: starlady11@aol.com  and I will put you in touch with them.

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9:56:00 PM EST

I've probably worked with about a total of ten families across the country who have experienced the agnony of Neonatal Hemochromatosis (NH).  They usual email me or call in a panic and fear, sometimes it is not the parents, but grandparents or a family friend who contacts me, but all are fearful and have no idea what this horrible disease is.  Their baby has just been born and the doctors are telling them that something is terribly wrong.  The child is very ill, often yellow (jaundiced) and the child's liver is failing because of toxic amounts of iron stored in it.  They want to know how and why this happened.  The sad fact is that no one is quite sure how this happens and doctors can only try to save the child through a combination of drugs and a liver transplant as soon as possible.  Because of the spotty success of the drugs and the limited supply of donated organs, most of the NH babies die.  Some are stillborn (born dead), but others survive for a while, days, weeks, and then pass away from the heartless assault of the disease. 

I often hear from people who have hereditary hemochromatosis (HH), which is a genetic disease.  In fact, it is the most common genetic disease in the U.S.A. according to the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia.  But NH is different than HH.  HH is treatable, even preventable, if diagnosed early and treated aggressively.  Both diseases, however, can leave their victims' organs, particularly the liver, filled with iron, an element we were taught to desire and seek when buying food and cereal.

Anyone who has had an experience with NH is welcome to contact me (starlady11@aol.com) and I will put you in touch with other NH families (no family's personal contact information is ever posted here or elsewhere; express permission to contact other families must be agreed upon by all parties involved).

 

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9:42:11 PM EST

In 1983, my dear mother, Josephine Bogie Thomas, was diagnosed with hereditary hemochromatosis (HH).   (See our web site: www.americanhs.org)  Unfortunately, HH killed her in 1999, but I have tried to carry on my mother's wonderful trait of giving and helping others by spreading the word about HH. 

It wasn't until I had become very familiar with the topic of hereditary hemochromatosis (HH), also known as iron overload disease, that I ever heard of "Neonatal Hemochromatosis" (NH).  I was shocked and saddened to learn that newborn infants experienced toxic amounts of iron stored in their livers, just like adult patients with hereditary hemochromatosis.  The difference was that adults with HH inherited their condition from their mothers and fathers, but little patients with NH were not experiencing a genetic disease, but rather a mysterious presentation of a similar outcome, toxic levels of iron in the body.  In the case of NH, infants are stillborn (born dead) or die shortly after birth (days or weeks).  In the past, the only shred of hope was given in the form of an emergency liver transplant.  Since donated organs for newborn babies are hard to find, most children die from NH in the early days of their lives.  This disease is a shock to the family, who may already have one or more normal children.  And, even more shocking is the fact that in the past, once a woman has had an NH baby, the chances are extremely high that subsequent children will also have, and die from, NH.   There has been little that anyone could do once NH has affected a family.   Some parents decide not to have any more children.  Others try again, and have another NH baby who dies.  Others have gone on to have another child and have a normal child.  But with the statistics so high that additional children could be born with NH, most parents approach repeat parenthood with great fear and anxiety.  Because it is so rare, they have few people to share their experiences with who have gone through a similar situation.  That is why I have worked to put those families together who have contacted me about NH so that they can have the emotional support that they so desperately need.

Now, there is hope on the horizon for families who have been affected by NH.  A new treatment that has been developed can be given to the mother of an NHbaby in the past, while she is pregnant with another child that will help this new baby survive!  This is nothing less than miraculous!  This journal is here to share this great news with the public.

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