Tuesday, September 20, 2011

A Melungeon connection to Familial Mediterranean Fever?

Some people never give up trying to defeat a proven fact. A person who writes a blog on the Melungeons (Melungeons are a group of folks in the U.S. who we believe have a Mediterranean ancestry.) has written about Familial Mediterranean Fever, about which she knows nothing. See a response to this blog written by the "OTHERS" on FMF here and on my blog:

A Melungeon connection to Familial Mediterranean Fever?

It never fails to amaze me that some people would rather see friends and relatives die, than admit that there might even be a SLIGHT possibility of an inherited illness amongst them. Familial Mediterranean Fever can be a FATAL illness left untreated. Why would anyone suggest that a relative die? What is so scary to some people that they would write about something that they have not researched, and which they deny is even connected to them?

Years ago, N. Brent Kennedy, author of The Melungeons: The Resurrection of a Proud People, told me that IF Familial Mediterranean Fever turned out to be an Appalachian thing rather than a Melungeon 'thing,' then the importance factor of this FACT was raised.

As both a patient with FMF and a patient advocate for others with this disease, I can state that it appears this is so. Cases of Familial Mediterranean Fever are being found all over the United States and in particular amongst those families having roots in the Appalachian Mountain ranges.

I moderate two Familial Mediterranean Fever sites, a mailing list on yahoogroups,

(subscribe - fmf_support-subscribe@yahoogroups.com )

I also moderate a website that is connected to the United States "rarediseases" organization. The rare diseases group is connected to a world-wide group of researchers and patients who are attempting to find solutions and cures for this at present incurable illness. It is written in 5 languages:

Also see NORD, National Organization for Rare Diseases

I have researched this illness and corresponded with doctors and other researchers. It is data from these sources that allows me to recommend doctors practicing in various states and countries to patients searching for an answer to serious, life-threatening health issues and to encourage them to ask their doctors to do the research that would allow them to TRY colchicine.

Years ago, my own doctors told me that a TRIAL of colchicine given in a specific amount and for a limited time would not hurt me even if I did not have the illness. A POSITIVE response to colchicine is a POSITIVE diagnosis of Familial Mediterranean Fever. And colchicine is the ONLY medication that prevents this illness from being fatal.

A recent blog noted that: "Some people have been misinformed that having Familial Mediterranean Fever proves a Melungeon connection."

Nothing could be farther from the truth! Having Familial Mediterranean Fever proves that somewhere in your ancestry you have Mediterranean ancestry. Many of us who have a Melungeon connection in our family lines, do believe that the Melungeons have a Mediterranean connection. After all, the Melungeons themselves noted that they were 'Portyghee.' Portugal is a Mediterranean country and probably one of the most ethnically mixed countries in the world.

When a person writes about a medical problem, that person needs to have not only compassion, but accurate information. The person writing the blog has neither.

The blog mentioned noted that: "The most dangerous aspect of this dislusional thinking is that the advice to just TRY colchicine is very dangerous advice because colchicine is a very dangerous drug." How disingenuous!

Since colchicine requires a prescription from a doctor, that is, a licensed MD, a suggestion to TRY colchicine must pass a rigorous medical procedure before any such prescription can be given.

The statement from this blog that: "An ethical Dr. would only prescribe colchicine if the benefits outweighed the danger. Leave the prescribing to a licensed physician." would be funny, IF it were not so dangerous to the health of those of us who have suffered through dozens of doctor visits to dozens of different doctors over dozens of years arriving at several dozen different misdiagnoses in order to arrive at the correct diagnosis and receive a script for the life-saving product called COLCHICINE. One does not say, 'Doc, give me colchicine and get it.'

As with most drugs there are side effects to colchicine. Given the fact that Familial Mediterranean Fever can be a FATAL illness, weighing the benefits, LIFE against DEATH, seems to me to swing the scales in the direction of life.

I would hope that patients would choose life. Listening to tripe such as that written on the other blog can lead to death.
Familial Mediterranean Fever blog - 'my story' w/ FMF, and LOTS of medical documentation, charts etc.

Familial Mediterranean Fever- rarediseasescommunity
Posted by Nancy at 9:59 AM 0 comments