Tuesday, February 28, 2017

By Ann Rabinowitz

A Litvak can be described as a Jew who is a descendant of those who inhabited, for the most part, the Grand Duchy of Lithuania which encompassed at various times the countries or specific areas of Estonia, Latvia, Lithuania, Belarus, Ukraine and the Suwalki area of Poland.  Given that geographical boundaries changed many times over the centuries, it is sometimes hard to determine what a Litvak Jew really was and which map gives a correct idea of where they lived. 

Further, a Litvak was more than a person within a geographical boundary.  They were often under the jurisdiction of a particular political entity to name a few such as a Polish magnate, a Russian Czar or Communist dictator, a French Emperor, or a Swedish or Polish King or even a German Kaiser or Nazi Fuhrer.  It is only in the 20th Century that this large landmass has provided various independent countries with their own governments. 

Carrying terminology even further, a Litvak could be an Askenazic, a Sephardic, or Mizrahi Jew which was another type of term based on a geographic location and religious observance even more ancient than being a Litvak.  Or, they could be Jews who worshipped with those of the Hasidim or Misnagdim persuasion.  It is the "primo" Litvak of all time, the Vilna Gaon, who provided the leadership and scholarship for the establishment of the Misnagdim.  And, a Litvak could even be considered as a Cohanim, a Levite or an Israelite and even more esoteric, belonging to a tribe of Israel, if known, that was the most ancient of all designations.

These Litvak Jews carried a lot of inherited baggage with them and they were very proud of it.  It is quite impossible then to just give one designation to "what is a Litvak" and leave it at that.  What we are as a Litvak has been passed down to us by our ancestors and has become an intrinsic part of ourselves. 

The accomplishments of the Litvaks are diverse and many in number and you may read more about them by checking out the LitvakSIG.org site and using the resources of the JGSGM Library which has quite a number of books relating to Litvaks

** The report was submitted by Ann Rabinowitz responding to my question who is a Litvak, after finding the 1875 Montefiore Census in Israel showing  my third great grandfather  reaching Jerusalem from Plunge Lithuania in 1865.

Submitted by Janice McKay. president of the Genealogical Society of Greater Miami

Friday, February 24, 2017

Submitted by Paulette Bronstein
JGSGM VP Programming

Friday, February 17, 2017

Jewish Genealogical Society  of Greater Miami  
is pleased to invite you to our monthly sessions at the Greater Miami Jewish Federation
 4200 Biscayne Boulevard, Miami, FL 33137**

Sunday, February 19,2017  at 11:00 am

Join us to celebrate our Anniversary !!

with Special Presentation :

Cindy Potter Taylor  , President
Jewish Genealogical Society of Palm Beach County

·         The superb lectures and workshops you have come to expect
·         Meetings for all experience levels, from first-timers to conference veterans
·         Hands-on mentoring with experts in our field
·         In-depth DNA workshops to answer your questions
·         Databases, Translators, and search tools available to all
·         Expanded exhibit hall displaying the latest family discovery tools and technology
·         Networking through popular Special Interest Group events
·         Special emphasis on Multigenerational Storytelling,

10:30 AM sign in and early bird visiting- 11:00 AM meeting begins Please RSVP by email to ymillman.jgs@gmail.com   

Check our website: http://www.jgs-miami.org  or go to our Facebook page

**Access to the parking is through the street in the back of the Federation building. The entrance code is “#001”. For a GPS or Google maps, use “4199 Federal Highway, Miami FL 33137” as the address. The Federation phone is 305-573-9174 (Security desk)

Wednesday, February 15, 2017

To our Members and Friends:

Notification delivered by our board member Dave Goodwin.
Bob is Elliot's cousin.

For more information please  contact Elliott


Hello All -

Lithuania Visit

I am finalizing plans to visit Romshoshok in May.  Along with Mark Mayper and family (Mark's father left Romshoshok in 1939, and Mark wants to visit the places about which his father told him), I will be going to Vilnius (Vilna), Kaunas (Kovno) and Rumsiskes (Romshoshok) for a total of 6 days (May 19-25).   During most of the trip, the director of the Jewish Library in Vilnius, Zilvinas Beliauskas, will act as our guide and interpreter in Vilnius, Kaunas and Rumsiskes, and he will also be arranging travel around Rumsiskes with the head of the Kovno Jewish community.   In addition, we will visit a couple of other nearby towns where old wooden synagogues are being restored.   Who knows what else we may see!

An important part of the trip for us will be to venture into the current town of Rumsiskes and seek out older people who may remember before the way, and may remember some Matzes. 

Anyone who wishes to join us would be most welcome.  Travel in Lithuania is very reasonable.

Israel Visit

I will also be visiting Israel for 5 nights after Lithuania (May 25-30).  I will be swapping my New York apartment with an apartment owned by couple in Tel Aviv.

I will be meeting Bina and Eliezer Rechtshafer and family while I am there, and I am hoping that we can arrange a meet-up of Matz relatives - similar to the one we had in 2012 - perhaps on Saturday evening, May 27th?    

Bina and Eliezer:  Would that work for you?  Can you write it into your calendars?

I will bring along an updated version of the Family Tree Chart that we looked at in 2012 at the home of Efrat Adler in Jerusalem (video of that evening is here:  https://www.youtube.com/watch?v=_CqwGoSA75Q&t=28s.

Bina and Eliezer:  I have attached an updated jpeg of the Family Tree Chart.   Could you look at it, see if it is accurate where it shows your family, and let me know of any additional information to add?   Once you have looked at it, I will send it out to be printed on a roll, and I will bring that along with me to Israel.

I look forward to hearing from you, and to seeing you in May!

Cousin Elliot Matz
Skype:  esmatz
mobile:  US 917-692-1909

Monday, February 13, 2017

© Peter Tarjan

My Uncle Avram Löbl (z”l) was born 110 years ago in Öcsény, a tiny village in southwestern Hungary. He was the youngest child of Uncle Náci (z”l), my paternal grandmother’s older brother. He was known as Anti, Antal, Bandi, András and Abraham at various points in his life, but he was known as Adon Avram Lobl in Meron, Israel, where he settled in 1957.
As a young man, Avram became a furniture maker. He made his way to Strasbourg to perfect his skills. It is a mystery how he got by as throughout his long life he only spoke Hungarian with any fluency.
Upon return, he opened his shop in Bonyhád, a small town in the same area. He married a girl from an orthodox family and became the father of my cousin, Erica, who at the age of ten, along with her mother perished in Auschwitz in July 1944, while Avram survived in the forced labor service for Jewish men. He returned to Bonyhád, resumed his trade and married for the second time another survivor, Rózsika. István, their blond baby boy was born in 1948.
There were only three survivors in the large Löbl family, Uncle Feri and Judith or “Jutka,” his 16-year old daughter, and Magdi, Avram’s other niece, about 20 at the time of her liberation.
The Vidor family had a huge house kitty-corner from Avram’s house. “Gyurka” (George) was the only survivor in that family. He was a year or two older than Magdi, a nice, cultured young man, very lonely, hoping to become a lawyer. Avram planned their match by inviting Magdi to visit him from another village and the two lonely heart orphans were soon married. After Gyurka completed his studies in law by correspondence, they settled in Pécs, the largest town in the area, where they are still living today in 2017. Gyurka is 93 and Magdi is 91. They are very proud of their son, a retired judge and their only granddaughter, an anesthesiologist.
During the 1956 Uprising a bunch of Jewish families hired a bus in Bonyhád that took them to the border to escape to Austria and subsequently settled in Tel Aviv. Avram stayed behind as he did not want to lose his hard-earned machine tools. Shortly after the failed uprising, the government gave permission to some Jewish families to leave legally. Avram and Rózsika decided to follow their former neighbors and arrived in Israel along with most of his shop equipment in 1957. The immigration officials asked him where he would like to settle down.. His answer was very specific:
         In a small town where the weather is moderate, where the people are religious, but not too religious, and of course, where they speak Hungarian.
         Moshav Meron! – shouted the official.
Meron, in the Galilee, a few miles from Lebanon, was founded by Hungarian speaking immigrants after the Shoah. Avram’s family received a tiny concrete house there with a solar water heater on the roof, a piece of land, where after clearing the rocks they planted plum trees, a shed for his tools and a chicken coop, called a lul, where they raised about 1200 chickens every 11 weeks. István became Yisrael and the family was getting used to their new life when Rózsika became ill and died of cancer in 1960.
Avram waited until the prescribed mourning period was over and then took a bus to Tel Aviv, where he looked up his former neighbors from Bonyhád. He asked them whether they knew of any eligible ladies, whom he could marry, as he needed someone to help with the orchard, the chickens and run his tiny household. When asked what sort of woman he had in mind, again, he was ready with the specifications:
         Modest, comparable in age, able to run a kosher household, willing to live in a tiny community, work hard and, of course, speak Hungarian!
His friends introduced Avram to Klari, a recently widowed lady from Oradea, also known as Nagyvárad, a Hungarian speaking city in Romania. Avram invited Klari to dinner and as they parted, he told her:
                – I’ll be back it two weeks!
As promised, he returned on schedule, they went out to dinner again where Avram asked Klari for an answer. She replied:
                – What’s the question?
When he explained his situation, Klari asked for three weeks to consider the proposition. She had lived in cities all her life, wasn’t religious, had no idea how to keep a kosher house and had a twelve year old daughter, Esther, to care for.
To keep the story short, they married and lived their hard life happily until Avram’s death in 2002.
But they faced an immediate problem: Esther and Yisrael could not live under the same roof according to orthodox tradition as they were not related by blood, only by their parents’ marriage. The solution was pragmatic: both kids were sent to ultra-orthodox boarding schools, where they were accepted without any cost to their parents, but heavily indoctrinated. – Klari once told us that during the kids’ school holidays Yisrael was following Klari’s every step to be sure that kashrut was observed to the last detail.
Once Avram established himself to some degree, he sent a formal invitation to Jutka who was already past thirty, living alone and working in Budapest. The formal letter sufficed to get Jutka a passport and a permit to leave the country for three months while keeping her job. As soon as she arrived in Israel, Avram said to her:
– You are not going back!
Jutka’s answer was straightforward:
         No way! I have a good job and a nice apartment there, and I don’t speak Hebrew!
         Nor do I – said Uncle Avram – but there must be something that would keep you here?
         Yeah, a husband…
Not an easy problem… Jutka was born with hip dysplasia, grew up to be very short, sweet, but far from being a beauty.
Avram was determined to find her a mate. He took the bus this time to Sefad, about 8 miles from Meron and asked his Hungarian speaking acquaintances whether they knew any eligible bachelors, who were suited for his short but sweet little niece. He was directed to Yisrael Zwecher, who owned a shoe store with his sister and her husband. Yisrael was about forty, also very short, with the reputation for a ladies’ man. He was born in a village in the Carpathian Mountains where the Jews spoke Yiddish and the locals spoke several languages including Slovakian, Hungarian, Romanian, Ukrainian, Russian, Ruthenian and other dialects. Zwecher completed six grades in elementary school, two years in a Slovak school, two in Hungarian and two more in Russian, as the area was annexed from Czechoslovakia by Hungary in 1938 and  by the Soviet Union in 1945. As a little boy, he attended a cheder, a Hebrew school, but as an adult, he showed little interest in religion.
Yisrael was considered financially stable and successful as he owned a Vespa scooter, a luxury in Israel at the time. He rode his Vespa to Meron and began to date Jutka. They had a nice time together, but Jutka’s visa was soon to expire and she was preparing to return to Budapest. Avram was not going to let that happen. He took the bus to Sefad, went to the Zwechers’s store and asked Yisrael:
         Adon Zwecher, what do you think of my niece, Jutka?
         She is a sweet, young lady.
         But what are your plans regarding her?
         I don’t have any plans…
         But do you know that she is going to return to Hungary soon?
         If you two were married, she’d stay…
Score another match for Avram!

Jutka and Yisrael were soon married and settled in Sefad. For many years, almost every Friday they rode their Vespa toward Meron, where they left it in a ditch and walked into the gated moshav to have Shabbos dinner with the Löbls. At the end of the evening they said goodbye, walked back to the ditch and rode back to Sefad. Avram never asked them how they got there and how they were going to get home. It was enough not to know to calm his conscience.

Susanna and I visited Israel for the first time in 1968, a year after the victorious 1967 war. Just a day or two before Pesach, we took an Egged bus from Haifa to Meron. The whole country seemed to be on the road to get home for Pesach. Susanna and I were the only foreigners on the bus and everyone was very nice and concerned about us. Susanna was pregnant with our first child and they gave her a seat in the first row near the driver. I stood for some time until I got a seat in the back. The person opposite to me on the aisle kept two chickens – tied together by their legs – on the floor of the aisle. Every time the bus stopped, the chickens slid forward and usually stopped next to Susanna, where they tended to relieve themselves. Quite an experience for a girl born in Los Angeles and raised in Manhattan…

Some of the passengers were curious about our business and each time one of them got off the bus, they reminded the driver to be sure to stop at Meron, where there was a simple pole marking the Egged stop. It was a hot day in April with all the windows open. As we approached the pole at Meron a bunch of passengers leaned out the window, shouting in Hungarian:
         Adon Lobl, vendégek jöttek! [Meaning, Mr. Lobl, guests are coming!]

I was stunned. Indeed, Uncle Avram was waiting for us with his bicycle at the bus stop and we fell into his arms after about 14 years.

We spent the first part of Pesach with them. Avram and Klari were happy to have us, Esther was very reserved, my cousin Yisrael seemed very tense as he had become a heavy smoker and had to be without nicotine for the Shabbat. When we asked their parents about the kids’ future, all they said:
         We hope that we won’t have to sit on the floor at their wedding.
We asked for an explanation. The folks in the next village were from Yemen, whom they called “Tayman,” who kept their tradition of sitting on the floors at festive events, such as weddings. We were stunned again to discover the prejudices of my Holocaust survivor uncle and his wife.

To close this shaggy-dog story, Avram and Klari’s dream came true. Yisrael and Esther were married to each other and on my second visit to Israel in 1983 they already had four young children.

We visited Israel once more in 2008. Again, we took a bus from Jerusalem to Meron. As the bus was climbing the hills, a crazy driver in a silver Citroën cut in front of the bus, slowed and forced the bus to stop. A tall, blond guy got out of the car, came to the door of the bus that the driver opened for him, stuck his head through the door and shouted:
         Peter, get off the bus, it’s me, Yisrael!
Like father, like son… We had a nice reunion with Yisrael, who had already retired as a colonel from the IDF and became a tour director for orthodox Jews who wished to tour Western Europe and China. Yisrael guaranteed glatt-kosher meals for them even in China and led their religious services.

Sadly, by the time of my next visit to Israel, Yisrael had passed away from cancer, like his mother. Klari was gone as well, but the four Löbl grandchildren were raising Avram’s 14 great-grandchildren. Jutka proudly told me, a non-practicing Jew, that someday there will be a minyan entirely made up of Avram’s grandsons.

May Avram, the matchmaker, rest in peace near the tomb of Rabbi Shimon bar Yochai in Meron.
P.S. For home work, figure out how many ways Yisrael and Esther were related to each other!

The Jews of Africa -- A Photographic Journey

Monday, February 20, 2017, 7:30 – 10 p.m.

Jono David American-British independent photographic documentarian of Jewish communities worldwide. His Jewish photo library (www.jewishphotolibrary.com) contains more than 115,000 images and features communities in 116 countries and territories on 6 continents. On The Jews of Africa -- A Photographic Journey. It tells the story of Jono’s 4-year photographic survey project which took him to 30 countries and territories in 8 trips totaling 60 weeks of travel. This photo project is the largest Jewish Africa photographic survey of its kind. The presentation will include an emphasis on the emerging Black Jewish
communities of Africa with a specific focus on communities in Uganda, Ghana, Cameroon and South Africa. 

 Recently, Beit Hatfutsot – The Museum of the Jewish People (in Tel Aviv, Israel) exhibited Jono’s photographic project under the title “The Children of Abraham and Sarah”. 

Monday, February 20, 2017 at 7:30PM at the Miller Center Auditorium 105 Merrick Building 5202 University Drive, UM - Coral Gables 33146. Light refreshments will be served on the Scharlin Patio prior to the event. R.S.V.P. ccjs@miami.edu; Tel. 305-284-6882; Fax 305-284-5274

Free and open to the public. Seating is limited. First come, first served.
Hi yoram,

After reading the info re factor XI deficiency info, I was hoping you could share the info below as well. BRCA mutations are another relatively common hereditary genetic disorder in ashkenazi Jews. (1 in 40). The attached article explains it.

Thanks.  See you at the next meeting.
Elizabeth Etkin-Kramer, M.D., F.A.C.O.G.


Please Join us for:

What’s Jewish about Breast, Ovarian….
and Other Cancers?  (…not for women only!)
Mutations in the BRCA 1 and 2 genes are associated
with a marked increase in breast and ovarian cancer as well as other cancers.  
Three specific mutations in the BRCA genes, called founder mutations, are more common in Ashkenazi Jewish men and women. One in 40 Ashkenazi Jews, both men and women, are carriers of a founder mutation regardless of family history, and most people are not aware they are carriers!  In these high risk individuals, there are specific guidelines to help prevent breast and ovarian cancer as well as enhanced screening protocols to increase diagnosis at an early, more treatable stage.  Come learn more about these and other Jewish genetic mutations associated with a high risk of developing cancer. You can participate in low cost genetic testing through a saliva specimen  at the same time!!! 

Sunday, March 19, 2017 at 1 pm
Temple Beth Sholom
4144 Chase Avenue, Miami Beach, Florida

Please RSVP at didyouknow.ash@gmail.com

Genetic testing done through Color Genomics

Presentation by Liz Etkin-Kramer, M.D.,F.A.C.O.G.
Genetic Counselor will also be available to answer questions

For additional information, please see attached.

Did you know???

1 in 40 Ashkenazi Jews have a BRCA mutation, regardless of family history----and most don’t know!

What does this mean????

A Little Bit of Genetics:     BRCA 1 and BRCA 2 are genes that, when working normally, are tumor suppressor genes, meaning they prevent cancer. When there is a mutation in these genes they can’t work to prevent cancer and cancer is more likely to develop.  There are thousands of individual gene abnormalities that can cause a mutation on the BRCA 1 or BRCA 2 gene.  These mutations are inherited in an autosomal dominant fashion from a parent who carried this mutation—either father or mother. What that means is that if your parent had a BRCA mutation, you have a 50% chance of inheriting this mutated gene.

In the general population, the risk having a BRCA mutation is not very common--about 1 in 300-500 people.  However, the chance of having a BRCA mutation in Ashkenazi Jews is 1 in 40, or 2.5%.  This is called the incidence of the genetic mutation, or how common it is to carry the mutation. The incidence of carrying a BRCA mutation is the same in both Ashkenazi men and women. **(see below re: founder mutations)

Why are BRCA Genes Important:   The penetrance of a gene mutation refers to a person’s risk of developing the disease from the genetic mutation, in this instance cancer.  BRCA mutations are highly penetrant genes. Women who carry a BRCA mutation have up to an 90 % lifetime risk of breast cancer, and up to a 50 + % lifetime risk of ovarian cancer.   Also, BRCA positive women tend to develop breast and ovarian cancer at younger ages; For example, 20% of BRCA 1 positive patients develop ovarian cancer before the age of 50.  Men who are BRCA positive have up to approximately a 15% risk of developing prostate cancer, as well as an increased risk of male breast cancer.  Pancreatic cancer and Melanoma can also be seen in BRCA carriers.

Who Should Be Tested for BRCA mutations:  Medical organizations in the past have recommended that Ashkenazi Jewish men and women be tested for a BRCA mutation only if there was a family history of breast, ovarian or pancreatic cancer.  Newer studies, however are questioning this approach.  Why? Because we see the same BRCA incidence in Ashkenazi Jews without a family history of cancer. The risk of carrying a BRCA mutation is 1 in 40 in Ashkenazi Jews is independent of family history.  And even without a family  history, in people who are BRCA positive,  the possibility of developing a BRCA related cancer is still very high.

Why do I want to know: We want to identify people who are carriers before cancer develops.  If a person is BRCA positive, there are guidelines for increased surveillance to help diagnose cancer at its earliest and most treatable stage, and procedures recommended to decrease the risk of developing these cancers.  This includes breast MRIs beginning at age 25 and both yearly MRI/mammogram at age 30.    Risk reduction surgery is also recommended, usually by age 40.  This includes bilateral mastectomy with reconstruction as well as removal of the ovaries and tubes, around age 40, or whenever child bearing is complete.  It may sound drastic, but it is better to prevent a cancer than to treat a cancer, especially in the case of ovarian cancer.  Ovarian cancer is very difficult to diagnose, and when it is diagnosed is it is frequently at an advanced stage.

What about other Jewish genes that increase the risk of cancer:
There are other genes in Ashkenazi and Sephardic Jews that can increase their risk of cancer.
For example, there is a gene that is carried by up to 10% Ashkenazi Jews that increases the risk of colon cancer. Another gene more common in Ashkenazi Jews increases the risk of Lynch Syndrome, a syndrome associated with colon, endometrial and ovarian cancers. There are also mutations on various genes that are more common in the Sephardic Jewish population. For example, 1 in 80 Sephardic Jews carry a mutation on the ATM gene, which is associated with an elevated risk of breast cancer.

Why Color Genomics:  There are a handful of specific genetic labs that have acceptable methodology.  Color Genomics is one of them.  Their unpaid advisory board is comprised of well-known medical thought leaders, including Mary-Claire King, one of the researchers who first identified the BRCA gene in the 1990s. And for $249 for a 30 gene panel associated with hereditary cancer syndromes, including BRCA 1 and 2,  Color Genomics has found a very cost effective way identifying Ashkenazi Jews who carry mutations that could increase their risk of developing cancer.

Founder Mutations: Founder mutations are gene mutations that are more specific to an ethnic group. On the BRCA 1 and 2 genes there are about 3500 known mutations.  Only 3 of these are founder mutations.  If an Ashkenazi Jew is positive for a BRCA mutation, ~ 85 % will be one of these 3 mutations. That means if an Ashkenazi Jew is checked only for the founder 3 mutations, we will miss about 15 % of the mutations they could be positive for. There is a BRCA founder mutation in Sephardic Jews, as well, but the incidence is closer to that of the general mutation, or about 1/300. In this gene panel, all mutations in the BRCA genes are analyzed.

Additional Information and Links:

Pink and Blue: Colors of Hereditary Cancer: https://www.youtube.com/watch?v=SftAvdvYBm4

Elizabeth Wurtzel, 9/15/15, New York Times: “The Breast Cancer Gene and Me”,   https://www.nytimes.com/2015/09/27/opinion/sunday/elizabeth-wurtzel-the-breast-cancer-gene-and-me.html?_r=0

Roni Caryn Rabin, 9/4/14, New York Times: “Study of Jewish Women shows Link to Cancer without Family History” https://www.nytimes.com/2014/09/05/health/05cancer.html

Additional information available at:


Saturday, February 11, 2017


It is great sorrow that I share the news that Howard Margol, z”l, passed today. Howard was IAJGS President from 1999 - 2001. In 2008, Howard was awarded the IAJGS Lifetime Achievement Award “in recognition of his pioneering work in Lithuanian Jewish Genealogy research, his personal efforts on behalf of Lithuanian record access and translation, and his many years of guiding genealogists back to their roots. The American Fund for Lithuanian-Latvian Jews, which Howard created, provides much needed help to the Jewish community of the Baltic States. He has served in many roles, including president of the JGS of Georgia, president of the IAJGS, and chair of the Litvak SIG…” Howard’s work lives on.

We are all in sympathy with Howard’s family and the Jewish genealogical community. To his everlasting memory.

Marlis Humphrey

IAJGS President

Thursday, February 9, 2017

Dr. Robert Davidoff Article ( Special interest to Ashkenazi Jews)

Factor XI Deficiency in Ashkenazi Jews:
Should you get Tested?

It is well known that Jews of Ashkenazi descent are prone to a variety of genetic disorders.  In fact, as many as one in four Ashkenazi Jews is a carrier for at least one genetic disease.  As an Ashkenazi Jewish physician and researcher with an interest in genealogy, I want to call everyone’s attention to Factor XI Deficiency:  Why?  Because I made it into my 80s unaware that I had it, even though it had caused me serious medical problems more than once.  Because it is an inherited condition you may not know you have it.  And especially, because it is a condition that a great many physicians are not aware of. 

A few years ago I tripped and fell, landing on my left side.  I broke a bone in my wrist and one in my ankle, so the fall necessitated a trip to the Emergency Room.  A really enormous hematoma (swollen bruise filled with blood) had developed in my thigh and hip where I had hit the ground.  When a routine blood test revealed that my hemoglobin level was surprisingly low, it became obvious that there was a lot more bleeding into the bruise than there should have been.  I was admitted to the hospital for further tests. The hematologist who saw me drew many tubes of blood and asked about any family history of bleeding.  I mentioned that I had a first cousin whose intractable nosebleeds were not able to be corrected by surgery.  He had told me he had some type of abnormal blood factor, but didn’t know what type.  Most importantly, she asked me about my ethnic background. 

That’s when I learned about a bleeding disorder known as Factor XI Deficiency (also called Hemophilia C[1]) which is quite common among Ashkenazi Jews. Often symptomless, one of the mutated genes causing the disorder has been passed down through the generations, it is believed, from the Jews who migrated to Poland and the Baltics after the Destruction of the Temple in 70 CE, or possibly even from some time prior to the reign of King David.  A second mutated gene is of more recent origin.

Factor XI Deficiency is characterized by low levels of a blood protein called Factor XI, a clotting factor present in blood plasma.  (Clotting factors are specific proteins that are necessary for proper clotting, the process by which blood solidifies at the site of a wound to stop bleeding.)  The mutations in the F11 gene that give rise to Factor XI Deficiency are inherited in a recessive pattern: both parents must carry mutated genes to pass Factor XI Deficiency on to their children.  If both parents are carriers of the mutated gene, even if the parents are asymptomatic, each child has a 25% chance of developing the disease.  Males and females are affected equally.  Among Ashkenazi Jews, the two gene mutations mentioned above are quite common; a third mutation has been found among Iraqi Jews who stayed in the Middle East in relative isolation for 2500 years, but is not as commonly found as the mutations that affect Ashkenazim.[2]  Factor XI Deficiency is also found in Israel in smaller numbers among Sephardic Jews and Israeli Arabs.  It is believed that 8% of Israeli Ashkenazi Jews have Factor XI Deficiency, and that percentage is probably as high in the United States.  Between 8-13.4% of Ashkenazi Jews here and in Israel are estimated to be carriers of the mutated genes, even though they do not have Factor XI Deficiency.  In contrast, its incidence in non-Jews in the United States is very low, estimated at 1 in a million individuals.

Not everyone with lowered levels of Factor XI has symptoms.  But those who do may experience prolonged blood flow from wounds, tooth extractions, tonsillectomies and other surgical procedures, particularly from surgery involving the urinary or genital tracts.  Nose bleeds and easy bruising are not infrequent.  More than half the women so affected have heavy or prolonged menstrual periods or excessive bleeding after childbirth, miscarriages, or abortions. Serious bleeding may occur after circumcision; but thankfully, that is rare. Blood-thinning medications like Pradaxa, Xarelto, and others, may cause internal bleeding.   And the thing is—you may have a Factor XI Deficiency, not know it, and go for decades until symptoms seem to show up “out of the blue.” 

That certainly happened to me when I fell, but as I look back, it explains the four units of blood I needed during back surgery during my thirties, the hemorrhage that started many hours after prostate surgery, and massive bruising when I was put on Pradaxa.  Each “bleed” involved a different doctor; and because I don’t remember ever having heard about Factor XI Deficiency, there was no one to put the picture together. Had my condition been known, Pradaxa would never have been prescribed for me, and the bleeds prior to my fall might have been avoided.  In other words, those who know they have Factor XI Deficiency may need specific therapy for surgery, accidents, and dental extractions. Health care providers should be made aware of a history of bleeding when a surgical procedure is planned.  For severe cases, appropriate management should involve a hematologist, an internist or family physician, and the surgeon. 

Should you be tested for Factor XI Deficiency? 

Bleeding in individuals with this disorder is very variable, ranging from a complete absence of symptoms to severe bleeding that requires multiple transfusions after injury or surgery.  The bleeding may be immediate or delayed.  And for some unexplained reason, there is a poor correlation between severity of bleeding and laboratory measures of Factor XI coagulant activity.  In other words, on the basis of lab tests, some persons who would be expected to have major bleeding problems may not, and some people who would be expected to have mild symptoms may have serious bleeding.  Not only that, the severity—or even the presence—of excessive bleeding may vary widely over a particular individual’s lifetime.  If one knew for sure that testing positive meant you were at risk for serious bleeding, then you’d want to be tested.  But this is not the case.  Diagnosis requires the synthesis of a bleeding history, family history, and specialized laboratory tests.  You should consider being tested before elective surgery if both your parents are Ashkenazi Jews and if you or any family members have had bleeding problems.

Robert A. Davidoff, M.D.
Professor Emeritus
Departments of Neurology, Pharmacology, and Physiology
University of Miami School of Medicine
Miami, Florida, USA

Author’s Disclaimer:
The above was not written as a peer-reviewed medical article would have been.  I am not a hematologist.   Nor am I in any way an expert in Factor XI Deficiency.  I’ve written this to make my co-religionists aware of a genetic disease that affects our community.

[1] Those affected with Factor XI Deficiency do not spontaneously bleed into joints and muscles the way those with “classic” hemophilia A and B do.
[2] (Different mutations in the F11 gene are found in other ethnic groups as well, but far less frequently.) 

Wednesday, February 1, 2017

Subject JGS of Greater Orlando Presents, "The Changing Borders of Eastern Europe" with Hal Bookbinder
From: Lin <lin2@cfl.rr.com>
Date: Tue, 17 Jan 2017 23:52:13 -0500
X-Message-Number: 12

A Jewish Genealogical Society of Greater Orlando "My Jewish Roots" Workshop Roadshow

The February "My Jewish Roots" Workshop, "The Changing Borders of Eastern Europe", traces a millennium of border changes in Eastern Europe and the impacts of these changes on our Jewish ancestors. An ancestral town may have been under the rule of several countries over time. Recognizing which governments were in control at various times can help in understanding the environment in which ancestors lived, events that stimulated migration, languages in which records were kept and likely locations where these records might be found. As the Russian Empire expanded west in the 17th and 18th centuries, millions of Jews found themselves within the Empire and Russia found that it needed to deal with a people it had tried to exclude for hundreds of years. JGSGO President, Jerry Kurland, remarked, "Hal Bookbinder makes Eastern European history and our Jewish roots come alive."

Hal Bookbinder, our presenter, has identified over 4,000 relatives, tracing two lines to the late 1700s in modern-day Ukraine. He has written and lectured widely, focusing on providing historical context to our ancestors' experiences in Europe, in migration and in America. Hal is past president of the International Association of Jewish Genealogical Societies (IAJGS) and has chaired a number of IAJGS conferences. In 2010 he was recognized with the IAJGS Lifetime Achievement Award. Hal directs IT Strategic Finance for UCLA Health, teaches for the University of Phoenix and directs a job skills program for individuals in recovery at the LA Midnight Mission.  Hal and JGSGO mavens will assist workshop attendees as they start their family discovery journey on their own laptops.

"The Changing Borders of Eastern Europe" with Hal Bookbinder will be held: Tuesday, February 7, 2017, 7:00 P.M. - 9:00 P.M. at the Roth Jewish Community Center, 851 N. Maitland Ave., Maitland, FL. The workshop is FREE and open to the public. Bring your own laptop to participate in the lab portion. It is also possible to attend via the Internet. Pre-registration is required. Pre-register for either in-person or online participation at www.jgsgo.org/MyJewishRoots .

ABOUT "MY JEWISH ROOTS" A JGSGO WORKSHOP ROADSHOW The "My Jewish Roots" series of 10 monthly hands on workshops hosted by the JGSGO is co-hosted by the Roth JCC, Rosen JCC, UCF Hillel, Congregation Ohev Shalom, and Temple Israel in rotation at their facilities and also joinable over the Internet. In addition to assisting attendees in discovering their family tree, these workshops will help the Orlando Jewish community get the most out of the upcoming 37th Annual International Association of Jewish Genealogical Societies (IAJGS) International Conference on Jewish Genealogy. This premiere international conference will be held for the first time in Florida July 23-28, 2017 at the Disney Swan Hotel with local host JGSGO.  For more information, visit www.jgsgo.org/MyJewishRoots .

For more information:
Lin Herz