A Little DNA Goes A Long Way!

So sorry that this post took so long and even more sorry that I did not get to continue the story in this post and I apologize for not having proofed it yet. The site will allow me to do that later. One of the advantages of writing this blog prior to a book is that it is very easy to edit. Thus, as I catch mistakes both in grammar or new research facts, it is very easy to correct. This web provider's operation has been super easy until today.

The tardiness of the story is because, in the last several days, I realized that this information, unlike Law and Order is based on real people! Therefore, to avoid any slander, I twice reread the roughly 300 pages of probate court depositions to make sure that I do not misrepresent someone or something. These probate documents are public records and I just want to make sure that my characterization of the people involved is as reported in the affidavits or the depositions.

The reason for my Obsession:

In 2015, 2016, and 2017, my sister began losing lots of weight. She had been diagnosed with neuropathy and was caring for her husband. He had not been super healthy since a liver transplant several years earlier. His health was on a downhill trajectory and lots of caregiving was required of her. Their two children helped a great amount but with young children and spouses of their own, there was plenty of caregiving opportunities for the whole family.

Unfortunately, my sister, Dana, seemed really fatigued and seemed to struggle to enjoy life like she once had which would certainly be understandable with a bed bound husband. And still, her husband's care requirements just continued to get more and more difficult. He passed away in February of 2018, in some ways, I would call it suddenly. He had a real nose-dive at the end. It was a little surreal for all of us, and of course Dana.

Dana's husband, Roy, had been practically bed bound if not fully bed bound since the beginning of 2017, He was paralyzed from the mid-chest area down. If you have ever been the primary caregiver for a loved one in that situation, you get even closer to them than normal because they require almost as much care as a baby.

Very unfortunately, my sister never seemed to feel well. I distinctly recall three or four incidences where I could tell that she was getting fatigued or sick far too quickly and often. She had a pretty high pain tolerance because if I am not mistaken, she got no drugs for her son’s birth and wanted to stay at home as long as possible. She delivered him 45 minutes after arriving at the hospital.

As an example of her fatigue, for Decoration/Homecoming day at Union Grove Baptist in Big Gully, we had what I thought was an awesome cookout. I cannot recall the numbers now, but we had a good crowd and a good time was had by all. Even though my sister had a grandchild and greatgrandchild with her ( for basically whom she had lived since their birth ), she left early due to feeling poorly.

Eventually, she got pretty severe upper back and shoulder pain. At the same time Dana's legs became more "tingly" and she was losing her mobility fast it seemed. Her neurologist finally requested that a brain scan be performed. It showed a pretty good-sized lesion on her brain stem. Unfortunately, it was in such a “high rent district” as one doctor called it that it was much too dangerous to biopsy the lesion.

Of course, everyone thought it was cancer and she was referred to a radiation oncologist. Just as they were about to pump her full of radiation, the oncologist noticed that the anti-inflammatory drugs had seemed to either keep the alleged tumor from growing and possibly showing a slight decrease in size.

Therefore, before the radiation-oncologist started the radiation treatments, he sent us to an excellent neuro-oncologist at Vanderbilt University Hospital (I learned a whole lot of new names for medical specialties). We made several trips and experimented a little with a variety of treatments and diagnostics including at least two spinal taps. None of his observations seemed to reveal brain stem cancer. Apparently, brain stem cancer in adults is very aggressive.

After lots more tests to rule out most everything it seemed, the Vanderbilt Neuro-oncologist determined based on some very distinctive symptoms, one of which was ulcers in her mouth and another was the response or the lack thereof to treatment. His initial thoughts and working diagnosis were Behchet's disease with neurological involvement.

Before that opinion, he asked if we had any ancestry from the "old silk road" area such as somewhere in the Iberian Peninsula or close thereto. Those areas he asked about included places such as Turkey, India, the Middle East, Northern Africa.

If you know me, it is obvious that I am very much Caucasian appearing and get sunburned easily. I would not describe myself as pale but more fair skinned than dark. Since Behcet's syndrome was discovered by a dermatologist I mentioned it to mine. She certainly would not have suggested that I was anything other than a fair-skinned Caucasian. I seldom ever leave her office without leaving her a little bit of my-self. She has to remove some type of cancerous growth (nothing serious yet) each time that I go to her office. Apparently, as a kid through early adulthood on the farm, a surveyor early in my career, playing my fair share of outdoor basketball and tennis, my skins response to sun exposure left permanent damage unlike people who have more skin pigment and are darker than me.

My sister was a bit darker and tanned better than I did but we had not given it much thought in the past. Our father always appeared dark skinned with dark black hair, but we were small family farmers and dad was not in the house often unless it was raining in the summer. Therefore, we mostly wrote that off to a farmers tan. However, once summer receded his skin would lighten up some in the winter. Our mother tanned well but nothing dark enough to think much of it.

To attempt to make a long story short (of which I am not very good), every doctor we saw for the first time from the Vandy doctors, through visits with our neuro-immunologist to our final trips in the ICU, every doctor asked us those same questions about our ancestry. Did we have a Middle Eastern, Iberian Peninsula, North African or south Asian ancestry? This eventually became far too much to ignore for someone who wants and feels like he needs some answers.

Therefore, my mind drifted back to seventh or eighth grade during an interview with my grandmother “Doll” as well as our great aunt Mae about our ancestry. She told me that her mother had some Indian in her and called herself Black Dutch. At first, I thought that it was just some measure of Native American and everyone called themselves Black Dutch because people of any color other than white could not own land, vote, etc. just a few generations before. Furthermore, my Grandmother’s brother, my great uncle Louie was always told that if anyone asked to tell them that we were Black Dutch. His picture is the cover for this post.

Additionally, my Grandmother had told me that one of her grandmother's (my great great great great grandmother) was a Grindstaff before marriage. As I understood it at the time, Grindstaff was a miscommunication for the German name Cransdorff that was typical during the immigration process. I thought, is Black Dutch a mispronunciation of Black Duetsch. There are the Black Mountains in Germany and after all, one mails a letter to Germany the address is Deutschland.

At the time, I was still young, and you do not think too much about it because at that age, your grandparents are just your grandparents and I had never thought about their complexion tones. My only experience with genealogy research was some prior genealogy publications. I was lucky enough to run upon one from a distant relative who worked really hard on the Rhyne genealogy. One of Eli Johnson’s daughters married a Rhyne ( see the "Be fruitful and multiply" post for a summary of that generation). That publication helped me put the Johnson line in order. As much as I could do in my spare time as a very busy high school student who was still needed on the farm, my paper trail often ended with information on gravestones.

However, once Al Gore invented the internet, just kidding of course, I was able to not necessarily access records easily due to the lack of speed of our connection in our very small rural corner of the world, but I decided to use whatever search engine was available at that time and typed in Black Dutch. The very first article that I pulled up was titled "So, they told you that you were Black Dutch". I thought I was about to read an article about German immigrants.

I had periodically worked on the genealogy for years but had a house fire in 2004 and lost everything including all of my genealogy paperwork. As a very off of the subject thought, you know that quote about “you only get in this life what you give away”. That became a reality for me after the fire. The outpouring of folks trying to help me reconstruct my life was amazing after the fire. Somehow and someway, folks started giving me back souvenirs that I had given them from my mission trip to the favelas of Rio de Janeiro to most every significant trip that I had taken. Then as time went on, my aunt Lucy McKeehan who had bought my grandmother Doll’s house, got a chance to go through my grandmother’s stuff and gave me all of the genealogy paperwork back that I had given my grandmother. It really was unbelievable because my grandmother had wanted a copy of everything that I had completed. In essence, I got it all back. (Sorry this blogger can chase a rabbit of subject for a while).

After 2004, I either saw this picture or had seen it but just not noticed it. The following picture is of my uncle Louie:

Thank you for these pictures Michele Johnson Atkins.

Once I saw this picture, I was sure that we were part Cherokee. Additionally, Uncle Louie’s nickname at work was Chief. After that I never gave much more thought to the Black Dutch other than to ASSUME that we were part Cherokee. I have now read several books about Cherokee DNA and will share that with you in a later post.

So again, because I cannot make a long story short apparently and because of these two pieces of information (my sister's genetic disease and our Black Dutch heritage), I decided that it was time to do some genetic testing. I have probably purchased 20 test kits at this point and took them or gave them to select relatives that can produce either a maternal lineage which I cannot on the X chromosome or a Y line that my DNA does not hold on the Y chromosome.

For example, I cannot trace the exact line on the Hill side of my family unless I get one of my mother’s brothers (My mother’s maiden name was Hill) to do a Y lineage test.

Keep in mind that the Y chromosome passes exactly from father to son except for a mutation that starts repeating every now and then. Once that happens, the Y line may have some mismatches. I was adamant about finding the source of our heritage. I think that I failed to mention that Behcet’s syndrome is an inherited condition and there is a specific gene that causes it (that phrase is a little strong). If you have the gene and the correct trigger, your body (as with some other autoimmune diseases) will attack every organ including your blood vessels.

I could write three more paragraphs about how many medical professionals asked us that same question about our heritage. This included a doctor in the ICU who said that he had treated thousands of cases in Turkey where he was from originally when he was first out of medical school but had not seen one case in the US until my sister. This is an exact quote from that ICU doctor. He stated, “Bechet’s syndrome is worse than cancer because it can attack any and every system of your body”.

Furthermore, based on my research, there are only 20,000 new cases of Behcet’s disease (20,000 new cases each year out of a population of about 328 million people) in the US and a very small fraction of those have neurological involvement. It is so rare that our team of doctors at Vanderbilt stated that they had never treated a case with neurological involvement before and never even seen one except maybe someone with the disease on stage being a part of a medical conference presentation.

Just please note, I do not know more about DNA than I know (propably 95 percent that i do not know). However, I have worked really hard to understand the basics as it applies to ancestry. I have used 23andMe, Ancestry.com, FamilyTree, and CRI genetics. They each have their own pros and cons. It depends on what one is looking for.

Each of these, I am told, basically use the same technical procedures on the DNA. Where they vary is in how many people groups from which the testing entity (i.e. Ancestry, 23andMe, Familytree, and CRI ) has a sample to compare your DNA.

A couple of more facts if one is looking for something specific in your DNA. If you want your maternal line which is all mothers typically for the last 5 generations, then you test your mitochondrial DNA. Since each father passes to his son an exact copy of his Y chromosome, your Y chromosome can show your lineage. However, periodically, there are mutations. A genetic mutation may sound like a big deal. However, it is just a small change in the Y DNA as just a slight bad copy as one might get on a copying machine from time to time. It may just malfunction a bit while being copied. These differences are called alleles. The helpful part of mutations is that once it occurs, it is past from father to son as an exact copy as well and thereby helps you determine which cousins with whom you have a common ancestor. I promise that all of this comes into play at a later date.

Below, I pulled an examplefrom FamilyTree just to show you how that an allele is recorded on their website.

Sorry that this does not show up very well. But, the important part as it relates the above information is that whomever had their DNA tested on 67 points of their Y chromosome, have three matches above with zero alleles. Seven people have only one mutation on the Y chromosome. This means that 66 of the 67 points measured on the Y chromosome is an exact match to the test subject. Yes. I know, pretty boring!! Sorry but it becomes necessary as our story proceeds.

But, with the technology available a part of genealogy must include DNA testing and for me specifically. That is the manner in which I will determine where not only Dana but possibly, Kent, our nieces and nephews and I have the gene for this rare disease.

Thanks again for reading and I really hope to post the next segment of the story in no more than a week. I know those parts of our history are much more fun. Stay safe!