Porphyria Genealogy and The Roots That Bind

If you think you couldn't possibly have document family history and connections to the Royal tree you need to read this book.


Gary Boyd Roberts, nationally renowned Senior Research Scholar emeritus at the New England Historic Genealogical Society (NEHGS) in Boston, Massachusetts, is well known for American Ancestors and Cousins of The Princess of Wales (1984), Ancestors of American Presidents (1989, 1995), Notable Kin, 2 vols. (1998-99), his Internet column on the NEHGS website, his introduction to C.A. Torrey's New England Marriages Prior to 1700, and his selections and introductions for fifteen volumes of journal articles reprinted by Genealogical Publishing Company. His 1993 compendium, The Royal Descents of 500 Immigrants, was an "instant classic," and became the springboard for much further research. He contributed to the last two or more editions of Ancestral Roots, Magna Charta Sureties, and The Plantagenet Ancestry of Seventeenth-Century Colonists. In addition, he has helped NEHGS patrons trace their royal descents and "notable kin" since 1974 and has lectured widely on various related topics.

Mr. Roberts' has written a twenty-three volume manuscript called "The Mowbray Connection," copies of which can be found at NEHGS, the New York Public Library, and the Society of Genealogists in London, is subtitled "An Analysis of the Genealogical Evolution of British, American, and Continental Nobilities, Gentries, and Upper Classes Since the End of the Middle Ages."
http://www.genealogical.com/products/The%20Royal%20Descents%20of%20600%20Immigrants/4963.html

Girl's Gone Child: SheNANNYgans: Introducing Lauren

Girl's Gone Child: SheNANNYgans: Introducing Lauren

Neurology Minutiae: Porphyria pearls

Neurology Minutiae: Porphyria pearls

Porphyria And Genealogy

It's very important when diagnosing to consider "family history" to determine whether your Porphyria is inherited or acquired. It also catches some people who may slip into the cracks of "further testing required". but not always. When moms diagnosis was reversed because of ignorance on her doctors part I became frustrated and decided to see whether people with Porphyria actually were related to each other. I can't go into detail about the project because of confidentiality but I can tell you it not only amazed the people involved but it amazed the geneticist to the point that he got involved and helped us immensley to get DNA done in Spain to determine if we had King Georges gene. The genes mutate alot so it was a long shot but it did diagnose someone who previously had been told she did not have Porphyria because her levels weren't high enough. Yay... one life saved but the rest are still waiting for that unknown mutation to appear. Literally everyone in the project so far has connected to each other in the family tree from the same lines that gave George his Porphyria. Dr Rushton has written a book on the Royals and their Porphyria going into detail about the medical history and the probability of Porphyria.

Royal Maladies was written by Alan Rushton M.D., PhD who has practiced Pediatrics and Medical Genetics at Hunterdon Medical Center in New Jersey since 1980. He attended the University of Chicago and Yale University, and served on the faculty of Princeton, University of Medicine and Dentistry of New Jersey and the Medical University of the Americas. In 1994 he published Genetics and Medicine in the United States 1800-1922 and soon a new book Genetics and Medicine in Great Britain from 1600 to 1939.

Dr Rushton helped to explain a whole lot of things the group had questions about and explained how intermarriage of the Royal Families of England, France, Russia, Spain and German carried the hereditary diseases from one end of Europe to the other.

So for three years I literally buried myself into geneology and there's really no easy explaination of how so many people can be weaved together like a tightly woven tapestry. We may not have had Georges mutation (with the exception of one) but we certainly share his Porphyria lines several times over. My data base is huge and if you have Porphyria I bet your lines are in it.

Homefront Hugs

My sister sent me this great link to send cards to soldiers overseas. This Christmas if you'd like to send a card check out this great organization.

http://homefronthugs.com/

APF Links And Other Stuff

There are a ton of links out there and articles leading back to the APF website and you may wonder why I don't have them. If I tried to explain you would be turned off by the first few sentences but the bottom line is if you need the information it's easier to find than my blog and if you ask I will direct you there. If you are denied help there do not give up until you have been proven to not have Porphyria. If your levels aren't high enough for diagnosis be sure you are in attack when testing and there have been people turned away who did in fact have Porphyria but the tests were done too late to be conclusive. With some types the porphyrin levels go down within days. The sooner you are dx'd the better and the less chance of developing peripheral neuropathy. Many stories out there about people who were tested many times before they fially got a positive test. There is huge controversy over what a "positive" test is. If you have a positive PBG you have to assume the life of a Porph until you can confirm you do not have it. A temporary dx won't kill you but an undiagnosed attack can. Avoidance of triggers is all that's needed until you are sure.

You may have seen a show on TV recently like CSI, House or Medical Mysteries where the patient was diagnosed with Porphyria. Most people will watch those shows and say "oh I don't have that" when in reality those shows take the worst cases and sensationalize them. If you have mysterious abdominal pains that cannot be explained by a doctor along with a checklist of various symptoms that may or may not manifest every time you have a possibility of having Porphyria especially if there is family history of the same unexplained symptoms. While it can affect you mentally it doesn't always and the most common mental symptom is depression. Sometimes it manifests as what we call a "fog" where you just aren't "with it" and get confused easily. I personally have trouble with my breathing and temporary incontinence because my muscles get weak. And the feeling of being wired... you are exhausted but just can't seem to get to sleep. That's when I start to carb load. Carbs don't have to be tons of sugars and cakes, it can be a baked potato or other complex carbs and most guidelines say you should eat carbs every three hours. Many people have to watch what they eat but aside from sulphites and MSG I've been pretty lucky. I don't take any prescriptions which I believe is why I'm able to tolerate more than alot of people as far as triggers. There is a long list of triggers and someone should avoid as many of them as possible but still live as normal a life as you can.

Eighteen years ago I was diagnosed with Acute Intermittent Porphyria after a phone call from my mother saying it could be the reason behind my mysterious illnesses.Mom had been diagnosed and when they tested me I had it too. Testing is difficult and some doctors aren't willing to diagnose unless the test is in the exceedingly high numbers which can be fatal if the doctor dismisses the thought totally. All it takes is one trigger too many. This blog is to reveal the complications with not only diagnosing but the ongoing struggle to live a normal life. I didn't realise it but I do have reactions to the sun which isn't typical for AIP but over the years I've noticed alot of things that I took for granted as being normal.

Stories

Today I am very discouraged reading some of the stories about Porphyria on the net. I have Porphyria and I have many online friends in my support group so have heard many many stories but the ones posted in blogs just seem so extreme when it comes to certain things. I welcome people to post their own story and you can do it annonymously. Don't ask for money and don't link back to a website that asks for donations. Don't claim that even the light from the computer causes attacks if you are known to be a regular in an online support group.