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,
http://health.groups.yahoo.com/group/fmf_support/messages

(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:
http://www.rarediseasecommunities.org/en/community/familial-mediterranean-fever

Also see NORD, National Organization for Rare Diseases
http://www.rarediseases.org/

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.
Nancy
Familial Mediterranean Fever blog - 'my story' w/ FMF, and LOTS of medical documentation, charts etc.
http://familialmediterraneanfever.blogspot.com/

Familial Mediterranean Fever- rarediseasescommunityhttp://www.rarediseasecommunities.org/en/community/familial-mediterranean-fever

5 comments:

mslovey said...

nancy the day before my 50th birthday i was at the dr. office and we laughed til i cried. i am an african-american female who has suffered in pain most of my life. my father and his mother both now deceased, and my son and grand-son also are sufferers. this is my 5th set of doctors and hospitals and finally my gastro dr. out of the blue decided to give me a dna blood test for fmf. it came back positive that it is in my genes. all these years people and doctors thought i was crazy. i even sought out therapy because i have been so depressed. this is real. i have been praying so long for an answer, now i am ready to start treatment. good luck. Renee

General said...

eat oatmeal every day

mk said...

I am part north african jew and I have all the symptoms how much doses of the drug do they usually start you out on?\

sophiethepearl said...

I ran into a woman in Walmart, and the subject of Fibromyalgia came up. She mentioned Melungeons, and remembered reading that one of the Melungeon traits is "shovel front teeth", which I have. She asked if I had a small bump right above the base of my skull in the bank, and I have that. Most of my ancestry is English, but on my mother's father's side, we know a lot less. If you saw a picture of my maternal grandfather (who I never knew), you might easily say, "he's a Melungeon!"

He had very curly hair and tended toward an olive, but not dark complexion. Everyone in my family has blue eyes, but there are brown eyes on that side, too. And a lot of very curly hair. I take after my father, in that my skin is quite pink, and I burn easily. My mother and sister, however, aren't nearly as pale.

I have a similar story to yours; I developed chronic depression when I was a pre-teen, and it persists to this day. Also, in my early 30s when I was pregnant with my son (who is now 29) I developed Chronic Fatigue and Fibromyalgia (or at least the symptoms). I have all the Fibro tender spots, plus I ache all over when the barometric pressure is high. I have symptoms like irritable or spastic bowel, restless leg, insomnia, and probably some others that come and go in intensity.

I've tried a gazillion different things to get rid of the fatigue, but it wasn't until I learned about colchicine that I thought there might be light at the end of my tunnel. I plan to keep in touch with your blog, and wish to learn all I can.

Ever since I even HEARD there was a people called Melungeon, I've been totally fascinated with the subject. I was told I resemble someone from "that tri-racial group of people that were once believed to be descendants of the 'lost Roanoke Colony'".

Thank you for having this wonderful blog. I will try hard to get my doctor to prescribe colcrys, and if things work well, I'll surely report it here! Wish me luck!
Carol R Parker

Alaa Pal said...

Sorry for my English, I’m Syrian my native is Arabic
I’m Alaa, 25 years old, I'm not a doctor, as well as you...I will speak about my suffering.
I spend 10 years suffering pain in my heart and lungs (Twice each month and two days every time)
Doctors didn’t know the problem ... they Gave me variety of diagnoses, took several medications, including Psychiatric drugs (actually I went to two Psychiatrist; the diagnosis was Irritable Bowel syndrome!!)
Until some doctor asked me for blood analysis during the attack for fibrinogen …. He was good doctor.
( I hate all doctors and I feel stupidity when I remember that more than 30 doctor did not put a possibility for Mediterranean fever)
Now I'm taking 1 mg of Colchicine..No pain, no physical problems … thanks god.
in fact, I did not read all what write ... long articles and my English is not good enough …. I do not know if you wrote about the Armenian suffering from anxiety and depression ….. Yes they are. And the depression becomes a hereditary with all FMF Armenian patients … what I think is that the depression and anxiety are affects everyone (Arabs and Jews) not only Armenian … Maybe because of the pain ... And perhaps because of genetic problem itself.
Why should we hold burden of two disease at least (FMF, depression and maybe anxiety) ... Why should I hold the burden of my ancestors genes :S
Now I'm confused
I don’t know what to do … I’m depressed; even don't know if the FMF is the cause of depression…. I went again and tried psychotherapy of depression after the the symptoms disappeared, Does not work.
What I want to know is the anxiety and depression treatable in patients with FMF?