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The Choctaw link with CREST Syndrome and Scleroderma

The Choctaw link with CREST Syndrome and Scleroderma

Posted: 30 Nov 2008 11:52PM GMT
Classification: Query
Surnames: Pressley,Presley,Arp,Green,Foster,Jones
I'm trying to investigate the link between an autoimmune disease called CREST Syndrome/Limited Scleroderma. After finding out I have it I have read the 9 out of 10 people with it are of Choctaw descent and are directly related to the first 5 members of the Choctaw nation. Exactly who are these five people? I know I am of Cherokee descent in fact my greatgrandmother spoke the language and the family is on all of the eastern rolls. Doing research a long time ago I did find one branch of the family, the Greens in N.C. listed as part Choctaw and also one person on my dad's side of family from Miss. listed as part Choctaw. I just find it hard to believe having so little Choctaw lineage I could end up with this disease so I'm wondering if I'm more Choctaw than I think.

Also would like to know how to contact the Choctaw Scleroderma Foundation as I found them listed online emailed them ages ago and got no response. So wondering if they have disbanded or just have different address now?

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 1 Dec 2008 3:32AM GMT
Classification: Query
From the quick research that I have just done on-line it looks like there were "5 families" who were tied in to the "discovery" of this disease. I would also be greatly interested in knowing more about this disease, and about the five families. My aunt appears to have this as well and we are of Choctaw descent and Cherokee as well.

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 2 Dec 2008 12:11AM GMT
Classification: Query
Hi,

If you don't mind my asking does your aunt have the ANA antibodies centromere pattern or does she have the SCL-70 antibodies?

As for being Cherokee and Choctaw I've always wondered if its much in the same. Growing up in East TN we studied the 5 civilized tribes a lot and even had one year in elementary school history devoted soley to the Cherokee. Plus I had a course in college on Native American history. Somewhere during that time I swear I read that Choctaws were nothing more than a small group of several families that got angry over tribal politics and left the Cherokee tribe to form the Choctaw tribe. Now I mentioned that to a Choctaw guy online once and he basically told me I was full of it and he had never heard that story.

My point is are their Cherokee people equally being affected by CREST Syndrome and don't even know it? Should more than the Choctaw be worried about this? I have read that Lupus is prevalant among Cherokee women as is rheumatoid arthritis among Cherokee men and women. But it probably also depends is autoimmune illness caused by genetics or some poison in the environment? Or could it even be caused by something like ticks? I had a nasty bout of Lyme disease from repeated tick bites I might add.

In case anyone else is reading I just want to urge you if you have odd muscle, bone or joint pain, or if you get a weird change in the texture of your skin on your face, lower legs, hands or forearms have the doctor run an ANA antibodies blood test. If it is CREST Syndrome it needs to be detected before it gets bad. CREST can cause internal damage to the heart, lungs and kidneys so you do need to know if you have it. This is a huge disorder among Choctaw women and really if you are part Indian you may think you are Cherokee but really be Choctaw or you may be both.

The Choctaw link with CREST Syndrome and Scleroderma

Posted: 5 Dec 2008 3:07AM GMT
Classification: Query
Surnames: KIRBY* GUYNES BUCKHOLTZ*BRASHEARS
Has anyone ever thought that when an Indian child was put on the rolls with his family ...that the child was put on the roll with their parent who had the higher blood amt in him/her.

If a Choctaw and a Cherokee married the child was put on the roll with the larger degree of blood no matter which one Mom or Dad it was.

The reason I know that is My GGrandfather was Choctaw along with his brother My GGUncle. My GG Uncle 1/2 Choctaw married a woman who was 3/4 Chrokee. All the children where enrolled on the Dawes final rolls of Oklahoma as Cherokee.

This might help in knowing as the reason some family's hear rumors about their Choctaw and their Cherokee heritage and they can find only one of the others in their lineage.

I guess in early years b4 the rolls we can't find out about other Indian that was in us.

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 6 Dec 2008 2:15PM GMT
Classification: Query
This does not pertain to Crest, but to heritage. My grandparents put some of their children under her Choctaw and some under his Chickasaw. It was strictly the parents choice. They did not have equal amounts of Indian blood.

Years ago, members of the Chickasaw Tribe came to my area to get people with Chickasaw blood to register. I, my children and grandchildren became registered, but refused to check the square giving up the Choctaw rights. Our cards have "Chickasaw/Choctaw" on them.

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 6 Dec 2008 9:15PM GMT
Classification: Query
You bring up an interesting point. I don't understand how percentage of tribal blood is determined anyway when both parents are mixed. My mother told me she is 1/4 Cherokee based on her father's lineage. But her mom also has some Cherokee hertitage and her father I discovered has some Choctaw blood when I was researching the family tree.

I assumed I was 1/8 Cherokee based on that. But still that doesn't factor my grandmothers heritage. And my dad has Cherokee from both his parents plus his dad I discovered has Choctaw, Creek and Delaware blood. So really just how much Cherokee am I? I almost feel like I should be entitled to enrollment as Choctaw because I ended up with CREST syndrome, but I know thats a moot point.

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 18 Dec 2008 11:54PM GMT
Classification: Query
That is interesting to hear. I don't know how they do it either. I do know I was told that the children of Indian's on both sides if different were put on the rolls...(DAWES FINAL)
were put on the parent that had the highest degree of Indian Blood.

This could cause problems in finding out where the CREST Syndrome came from.

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 30 Mar 2009 11:03PM GMT
Classification: Query
Surnames: Crownover, Casey, Choctaw
i just found out i have morphea, the localized version of scleroderma, and so far it is not bad but i am really interested in learning all i can now because i know the longterm prognosis once it goes systemic is not terrific. here is hoping it just stays where it is, subacute... but savvy enough to know anything can happen and some allready has.
i am fascinated by the connection to Choctaw lineage!! my own heritage is a mixed bag which includes some Choctaw ancestry, not sure how much. my dad has been trying for years to id his relatives on the official roles, without much success. dad was born in Oklahoma, tho i have never been there myself.
can anyone help me learn more about this condition? i would especially love to hear from others of choctaw heritage, from oklahoma or elsewhere. the medscape type websites are SO frustrating for an ordinary person to try to use! maybe some of us can put our heads together & find out some answers on our own, the old fashioned way... by sharing what we know (:

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 30 Mar 2009 11:06PM GMT
Classification: Query
Surnames: Crownover, Casey, Choctaw
i just found out i have morphea, the localized version of scleroderma, and so far it is not bad but i am really interested in learning all i can now because i know the longterm prognosis once it goes systemic is not terrific. here is hoping it just stays where it is, subacute... but savvy enough to know anything can happen and some allready has.
i am fascinated by the connection to Choctaw lineage!! my own heritage is a mixed bag which includes some Choctaw ancestry, not sure how much. my dad has been trying for years to id his relatives on the official roles, without much success. dad was born in Oklahoma, tho i have never been there myself.
can anyone help me learn more about this condition? i would especially love to hear from others of choctaw heritage, from oklahoma or elsewhere. the medscape type websites are SO frustrating for an ordinary person to try to use! maybe some of us can put our heads together & find out some answers on our own, the old fashioned way... by sharing what we know (:

(i am new to these boards, i think i double posted.... please excuse my goof)

Re: The Choctaw link with CREST Syndrome and Scleroderma

Posted: 31 Mar 2009 2:39AM GMT
Classification: Query
Hi,

Sorry to hear you have the disease too. Don't panic though because morphea is not the worst kind. Do you have strictly Scleroderma or do you have CREST? What kind of ANA antibodies do you have or have you tested for it yet?

If you have Sclero you need to be checked yearly for pulmonary hypotension by a cardiologist and you need to have kidney function blood tests run at least a couple times a year. There's no treatment though a lot of experimental stuff is tried on people. Be careful of doctors that try to force steriods and Plaquenil for Sclero as neither one stop it. Steriods will make people get really fat and Plaquenil is known to cause kidney failure and retina damage whereas Sclero can decide on its own to just go into remission so don't go after it with medications if its not bad. Just treat symtoms and watch out for Raynauds Syndrome.

With Sclero and CREST its not a matter of just how much Choctaw you have or if your family came from Oklahoma. The genetic link is that they found a high percentage of people with the disease trace back to one of the five original Choctaw families. So we're probably related. It doesn't matter if you are full, half or mixed blood its just a matter of being related to the original Choctaw with the bad gene. :(

Email me personally if you want to chat more about the illness.
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