When TV and genetics meet: Reflections on Grey’s Anatomy and BRCA

dna tvGuest Blogger, Allison Grant, reflects on the difficult decisions patients face following the identification of a BRCA mutation. 

In the middle of January I began watching, or as I will shamelessly admit, re-watching, the television series, Grey’s Anatomy. After being wooed by the drama and attractive doctors during my first time watching, I was able to focus more on the “medicine” and on medical ethics the second time around. To my surprise and delight, an episode in season two, Let It Be, closely followed the case of a woman named Savvy who was found to carry a BRCA mutation. Although Savvy did not have cancer, she had seen ovarian cancer take the lives of her mother, sister, and cousin. Savvy and her husband traveled to Seattle to seek advice from their close friends and doctors, the Shepherds, and to decide whether or not to move forward with surgery. Although her husband disagreed, Savvy eventually opted to have a bilateral prophylactic mastectomy, oopherectomy, and hysterectomy (removing both breasts, ovaries, and the uterus). The decision was not made lightly, and was made only after considering all of the statistics, risks, and consulting with appropriate health care professionals, including a genetic counselor.

I applaud Shonda Rhimes for writing and producing this episode in a medically accurate way that, in my opinion, also did a great job of showcasing how a critical medical decision such as this one impacts interpersonal interactions and relationships. Different opinions, and the subsequent social and emotional interpersonal hardships that result, were presented through Savvy’s relationship with her husband, as well as with one of her doctors.

As I was watching this episode I was pained by the stress felt by Savvy, the tension that it created in her marriage, and the difficult anticipation of the life-altering surgeries she was about to endure. For a few seconds I questioned my unwavering belief that knowledge is power. If Savvy had not known about her BRCA mutation, she would not have been facing difficult decisions and these hardships (a fact that some people believe argues against genetic testing in the absence of compelling risk). But I took a step back and looked at this case from a wider perspective, and apparently so did Shonda Rhimes. Personally, I do believe that, in most situations (including this one), knowledge is power. I believe that medical education and awareness about one’s own health are critical components to leading a healthy life. To turn a blind eye when science is offering a chance to proactively enhance one’s health and life expectancy is a private choice, but one that I would argue is made out of fear and a lack of understanding of the risks that can be avoided with the benefit of crucial, and now available, medical information. This sentiment guided Savvy’s experience. After meeting with her gynecologist and genetic counselor, she became empowered to take charge of her health and made an informed decision that she felt was best. In reflecting on her decision she states, “I know what I’m losing. I get it. But think about what I’m gaining. My life. This gives me a shot.”

That is why I love my job–why I love working with professionals trained in genetics, who promote the sentiment that knowledge is power. We give people a shot.

Allison Grant is currently the study coordinator for the Program for Jewish Genetic Health‘s BRCAcommunity Study. She will be attending medical school in the fall. Learn more about BRCA testing at BRCAcommunity.com

Educating about BRCA: The recurring personal questions that trickle in

BRCA questions

January 2016

Reflecting on 2015, we realized that the Program for Jewish Genetic Health gave around 40 live talks over the course of the year, to a wide variety of target audiences (not to mention the online “lessons” we release on MyJewishGeneticHealth.com to a worldwide audience). In thinking about the talks I personally have given over the last few months, I realized that many times the questions come after the Q&A portion, even weeks after. Sometimes the “asker” was aware of the fact that their question was too personal in nature, other times the asker may have thought their question would seem naïve. Occasionally, the asker has been thinking for a while about the topic and comes up with an inquiry that is rather deep.

Here are two examples of recurring personal questions that I have received after my BRCA-centered talks.  As a brief review, mutations in the BRCA genes predispose women and men to developing certain kinds of cancers including breast, ovarian, pancreatic, and more. BRCA mutations can run in families and be inherited by children.  Women and men who are shown by genetic testing to carry BRCA gene mutations have options to reduce and manage their cancer risks. About 1 in 40 individuals of Ashkenazi Jewish descent are believed to carry a BRCA mutation, even if there is no significant incidence of BRCA cancers in their families.

Question 1: My grandmother had XX cancer and my aunt had XX cancer. Do you think I need to consider BRCA testing?

The answer to this one is easy—I always remind the asker that I am not a genetic counselor or a genetic healthcare provider, and I advise them that they should consider meeting with one of those professionals to discuss their family cancer history. A good online resource for finding a genetic counselor anywhere in the US and Canada is http://nsgc.org/p/cm/ld/fid=164 (make sure to search under the ‘cancer’ in ‘types of specialization’). I also advise them to try to collect as much family cancer history information (including cancer type and age of diagnosis) as possible, so that if they ultimately decide to pursue genetic testing for hereditary cancer, the most appropriate (and most current) test can be ordered based on that family history.

Question 2: Given the 1 in 40 carrier rate of BRCA mutations in Ashkenazi Jews, have you yourself gotten tested?

For a long time, the answer was no, I am just not ready. The decision to pursue genetic testing is a very personal one, and several factors need to be considered including whether the timing is right to deal with the knowledge and its implications. More recently, the tides have turned for me, in part due to two comments that reverberate in my mind and heart. The first is something one of our Program genetic counselors likes to say–“Finding out that one has a BRCA mutation doesn’t change anything about whether that mutation is there or not…finding out allows an individual to be empowered to consider available options.”  The other is a sentence from a recent New York Times piece by the author Elizabeth Wurtzel after her cancer diagnosis and ensuing surgery and chemotherapy—“I could have avoided all this if I had been tested for the BRCA mutation.”

Part of me appreciates that audience members reserve their very personal questions at the end of (and especially during :)) my talks, since usually these questions do not have generalizable value. Maybe though, in the realm of genetics and cancer prevention, every “story” has the potential for a broadly relevant take home message.

Finally! A Genetic Test for Sephardi and Mizrahis Too

DNA code analysis

For years, when we got inquiries from Sephardi or Mizrahi patients about preconception genetic testing, we would respond that there is currently no testing panel as there is for our Ashkenazi patients. And we would feel bad about that because we know that, like in many other ethnicities, there are genetic diseases which are common in Sephardi and Mizrahi populations too.

When we hosted a genetic testing event at Yeshiva University in 2013, our flyer included a call-out to the Sephardi students to contact us privately and not to register for the event. Turns out, 22 interested students were disqualified from the event, and I have no idea how many actually called us to come in for private counseling and testing. My guess is zero.

Since the genetics for Sephardi and Mizrahi Jews differ by country of origin (and there many countries with Jews), genetics labs never really made it a priority to develop testing panels. After all, why should they develop tests that a tiny number of people will actually need? So we were left between a rock and a hard place; on the one hand, we encourage people to get tested for diseases common to individuals of their ethnicity, but on the other hand, we are unable to order any testing. We were essentially pushing a product we didn’t have.

This all changed about a month ago, when we started offering a new panel that was developed for Jews of all backgrounds. This new panel is made of 96 diseases; 48 of them are common in Ashkenazis, 38 in Sephardi/Mizrahis, and 10 overlap between the groups (it is a very large panel!). Here are some of the things that we have been finding since we upgraded:

  • People think they know what their ancestry is, but are surprised to find out they may be more mixed than they thought. A patient of ours could have sworn he was 100% Ashkenazi, but he came back as carrier for a disease that is common in Yemenite Jews. When he asked his grandmother if there was something he didn’t know, he learned that he had some North African ancestors!
  • The more diseases we screen for, the more likely someone will be a carrier. We used to say that about 1 in 3 people will screen positive for something. But so far, I think we have only had one patient who was not a carrier of anything on the panel. And of course, being a carrier, in general has no effect on one’s health and should not be considered a stigma.
  • Even though we have tripled the amount of diseases on our testing panel, the ‘classic’ Jewish diseases are still ‘classic.’ I would have thought that the more diseases we screen for, we would see a wider array of results, but we have been seeing that those diseases that have been on the panel since the beginning (the common ones, like Tay Sachs and Gaucher) are still the ones that we have been picking up most often.
  • We have  had a Jewish history lesson for our genetic counselors helping them understand the different migrations of Jews over the course of history, and how ‘Ashkenazi’, ‘Sephardi’, and ‘Mizrahi’ Jews came to be.

The bottom line is that carrier screening is recommended before contemplating a pregnancy for anyone that is at least ¼ Jewish. It doesn’t make a difference if one has mixed ancestry, if he/she knows that a relative tested negative in the past, or if he/she chooses to affiliate with a movement within Judaism. Our genes do not choose to be transmitted only to the “more Jewish” people. Most of the diseases on the panel are a burden on the affected person and the family and testing a couple before a pregnancy is one of the best preventative actions one can take to avoid heartache. Visit PJGHtesting.com to learn more about the testing.

October is also…

footprints

The month of October is a very busy time in the realm of awareness when it comes to breast cancer. The walks and pink ribbons pinned onto virtually every piece of cloth are a great way to remind women to go for screening. But they also normalize the condition and make women who have been affected feel like they are not alone. I myself don’t need my pink Kitchen Aid mixer to remind me that breast cancer exists, but I have to say that its presence on my counter makes whoever sees it realize that cancer is not a stigma and certainly not something to hide.

While breast cancer seems to get all of the attention during October, many people do not know that this is also SIDS, Pregnancy, and Infant Loss Awareness Month.  One of the most common things we hear in our reproductive genetics clinic is women saying that they suffer in silence-whether it is having a sick baby, or dealing with infertility, or pregnancy loss. Most couples do not publicize their struggles, and instead live dual lives of dealing with them in private while trying to pretend that everything is ok. And all that acting is hard!

I read a really well-written excerpt called “The Cost of Appearances” by Arthur Frank. This book chapter is about being a patient, but I think its message can be applied to couples facing loss in the reproductive realm as well. Frank writes, “Two kinds of work are involved in being ill. One kind takes place when the ill person works with emotions…and tries to find coherence about what it means to be ill. The other kind is the work the ill person does to keep up an appearance.”

When people going through tough situations try to be cheerful and “ok”, it makes the people around them more comfortable, but it sucks up a lot of energy and it prevents loved ones from being able to provide comfort. Many people facing loss isolate themselves because they fear that nobody will understand what they are going through and might not know what to say.

This is a normal response, but it is not necessarily a helpful one for the mind. Reproductive loss is so common, but people just don’t realize it because it’s often kept a secret. About 15% of pregnancies end in fetal loss or stillbirth. That is a lot, but again, people don’t often share this kind of stuff. There are no colored ribbons plastered on people’s houses when it happens to them.

I am not advocating for people to announce to the world every struggle they have.  The decision to share such things is a very personal one, and I can think of many good reasons not to. But, for those who are comfortable sharing, you will definitely be helping others who need someone to relate to.

There are many support groups out there for people who need to speak to and hear from others who have experienced similar things-and many of them offer the opportunity to make it anonymous.  There are also many mental health specialists who work in the realm of bereavement.

Let’s try to remember that you don’t get extra points for being “ok,” and that your mental health and relationships with others will be better off if you deal with your emotions. There are so many people who are there to help.

Here are a couple of resources in the Orthodox community that I know about. I am sure there are plenty more in your area.

Nechama Comfort, a support group in northern NJ for families who have experienced infant or pregnancy loss

Knafayim, 718-871-8968, hosts support groups via anonymous conference calls

National Council of Women NY Pregnancy Loss Support Program, hosts support groups and counseling in the New York area

A Time, provides education and support for couples dealing with infertility

Yesh Tikva, provides resources and tools for couples facing infertility. They also have a really nice list of other resources here

Bonei Olam, provides resources and means to help couples with assisted reproductive technologies.

Facebook-I have seen many groups that are closed to the public and are great forums to vent, ask for recommendations, and hear from others

Mental Illness Awareness Week and New Lesson!

MIAW-sticker-circle-2.5With the support of the Jewish Federation of Western Connecticut, we are grateful to be able to launch our newest lesson on MyJewishGeneticHealth.com addressing issues of mental health and mental illness in the Jewish community during Mental Illness Awareness Week. This lesson has been many months (and even years) in the making, and here’s why.

Since we launched MyJewishGeneticHealth.com back in May of 2013, we began getting requests to address mental illness in the Jewish community. While we had identified mental illness as an important issue to tackle, it was honestly a bit daunting, and we wanted to get the lesson right. Month after month, we would opt to develop other lessons, since we weren’t quite sure about how to approach mental illness on our online education platform. However, whenever we came across a particularly striking article or useful resource on the topic, we filed it away, hoping that it would come in handy once we were ready to prepare our mental illness lesson.  And the requests kept coming in.

At first, we tried identifying an expert lecturer who could do it all. We wanted it to be a person who could approach mental illness in a sensitive and community-oriented way, yet still speak about the hereditary components to mental illness. Finding such a person felt almost impossible. We finally realized that we didn’t need just one person, but similar to someone suffering from mental illness, we needed a team. So we changed up our model, and were able to identify three different expert lecturers to approach mental illness from different perspectives: the psychologist/community perspective, the genetic counselor/hereditary perspective, and the mental illness advocate/personal perspective. We really hope that listening to their videos is informative, eye-opening, and inspiring.

And that repository of articles and resources? Oh we went through that too. Days were spent poring over articles, listening to personal experiences, identifying and speaking to support groups, and becoming entrenched in the world of mental illness. It is heavy, and yet, unbelievably important.

About 1 in 5 (20% of) adults in the U.S. experience a mental illness. These numbers are not anticipated to be much different in the Jewish community. Mental illness is VERY common, and unfortunately, there is a still great deal of stigma in the Jewish community associated with mental illness, stemming from concerns about marriageability. This lesson is not just for those who suffer from, or have suffered from mental illness, it is for the whole community. Chances are, even if no one in your family has suffered from mental illness, one of your friends, neighbors, or co-workers has. As with most things, a little bit of education, awareness, and understanding can go a long way. Ignoring the issue doesn’t make it go away, it just means that as a community we are not addressing it, and people aren’t getting the help that they need.

We decided to launch this lesson during Mental Illness Awareness Week and around World Mental Health Day, which this year, falls on the heels of the Jewish holiday season. Preparing this lesson has given us at the Program for Jewish Genetic Health a great deal of perspective and has made us take pause to consider how deeply some in our community are suffering.  Our hope is that this lesson will stick with all of us as we exit this season of introspection, and that there will be takeaway lessons that can have an impact on individuals, families and the greater Jewish community.

PLEASE PASS THE TISSUES

tissues

Yesterday I made the whole team cry. Thankfully it wasn’t because I was making unreasonable requests related to productivity or deadlines. Instead, I had slotted off the morning so that we could all watch a movie together—Decoding Annie Parker (2013; we borrowed it from a local library). Without spoiling the entire plot for our readers, suffice it to say that the movie, based on actual events, follows a woman (Annie Parker) who has a strong family and then personal history of cancer. In parallel, the movie follows the decades of research by Dr. Mary-Claire King and her team on their road to discovering the BRCA1 gene.

We blog about the BRCA1 and the related BRCA2 genes regularly, but as a refresher—certain mutations in these genes lead to an increased risk to develop breast and ovarian cancer, among other cancer types. Additionally, BRCA1/2 mutations can be passed down from parents to offspring, and the chance of having a BRCA1/2 mutation is ten-fold greater in individuals of Ashkenazi Jewish descent than it is in the general population. BRCA “status” can be revealed by genetic testing, and BRCA mutation “carriers” have medical management options available to them for reducing the risk of developing cancers or for detecting cancers at a very early (and perhaps treatable) stage if they do develop.

It was my second time seeing the movie, and also my second time crying through it. But this time I also watched it with different eyes, since our Program has gotten more and more involved in the BRCA education and testing realms over the past two years. We talk and talk about the importance of knowing and discussing one’s family medical history. Even in the 1970s, before the concept of hereditary cancer predisposition syndromes existed, Annie Parker (and undoubtedly others like her) had the gut feeling that cancer was running in her family and that it was always lurking in the shadows, waiting to get her. And this caused Annie to live in constant fear and to obsess over things like breast self-exams, library searches, and diets.

In our times, we are fortunate to have the genetic knowledge about the implications of familial BRCA1/2 mutations and the ability to test for carrier status and to guide those who are identified as carriers. While being Ashkenazi Jewish is in and of itself a risk factor for carrying a BRCA mutation, this risk factor is exacerbated by having a family history of BRCA-related cancers. Under current guidelines from the National Comprehensive Cancer Network, being Ashkenazi Jewish and having a first or second degree blood relative (meaning a parent, child, sibling, grandparent, grandchild, aunt/uncle or niece/nephew) who has had breast, ovarian or pancreatic cancer at any age would warrant pursuing BRCA testing (along with genetic counseling). Many of us probably fall into that category but don’t realize what this may connote.

Getting back to the movie and all those tears—it’s been a really busy summer at the PJGH so far, and it was definitely a welcome change of pace to have “PJGH movie in the morning.” It was also really powerful and authentic have a good “group cry.” I think the whole experience reinforced our joint commitment to protecting the genetic health of the Jewish community and its future generations. But I still need to think about why the team is rallying for seeing Pitch Perfect together next.

PS The movie we saw (at work) was pretty graphic on multiple levels–consider yourselves warned…

Striking the Balance: Giving Advice while Respecting Privacy

2015-22-June-Balancing-Act-2Genetic counselors tend to be very attuned to the details in the ‘big picture.’ We take very detailed family histories when we meet with patients because we look for patterns which may suggest a hereditary component to a family’s medical concerns. We are trained to think critically and to not just accept things as chance.

This method of thinking is a skill we need in the workplace, but I find that it is difficult for me to separate my ‘work brain’ from my ‘real life brain.’ When I identify a situation where I believe that a genetics evaluation or genetic testing may be appropriate for an individual or a family, it’s hard to “turn off” the instinct, even if the situation is in my personal life where the person or family involved is not my patient.

On occasion, I will see a mother with her kids at the supermarket or on the subway platform and something about the child’s appearance or behavior will make me wonder if there is something genetic going on in the family. Other times, I will hear about a young woman in the community who is struggling with cancer and whose mother had died young. Other people post on social media about praying for her,  about helping the family by providing meals and childcare, and there will be comments about how sad it is that this family is going through so much. But my first thought will be: Hmmm, I wonder if there is a genetic basis to this family’s cancer.  And even strangers who learn that I am a genetic counselor will tell me their stories about seeing a counselor years ago for their child’s developmental delays and how it was a waste of time since all the genetic testing was normal and nothing was solved.

It is times like these when I struggle to decide whether or not I should speak up and recommend a consultation with a genetic counselor (sometimes, a second visit is warranted since newer technologies have been developed and testing may be different). Close friends or family members who know that I work in the field of genetics would probably welcome my advice, but what do I do when I don’t know the person at all or I may know “of the” person, but we have no relationship? Am I overstepping my boundaries?

The answer is, perhaps. But as genetics professional, I feel that I have a responsibility to help families and my community by sharing my expertise. How to best approach it? That, I don’t know. I find that the solution is very case-by-case, and I need to try to determine how my advice will be received. I remember when my son was 6 months old, a friend of mine who is an occupational therapist mentioned to me that he tilts his head too much and I should consider a physical therapy evaluation. I thanked her for her gratuitous advice and got an appointment for him later that day (he’s doing fine now!). But would I want a stranger telling me to do something?

One good way to approach this, especially with a stranger or an acquaintance, would be to try to find an intermediary who may be better suited to reach out to the person. If I can find someone I trust who knows the person, perhaps he or she can broach the topic and tell them they know someone (me or another genetics professional) who can help them.  Only if I am feeling very bold would I actually say something to a stranger. But I would just hate myself for walking away knowing that I had the opportunity to help someone.  I hope that people do not see such advice as me trying to be nosy, but that they accept and appreciate that there are those people who may be able to help them, and that we genuinely want to be there for them as they struggle through a hard time.

I recognize that there will be situations where I can’t find an intermediary, and I can’t work up the courage to make recommendations to a complete stranger. That’s why publicizing the availability and importance of genetic counselors may help that family or other families in the future. The more that people recognize the utility of a genetic counseling visit, the more likely it will be that even if I can’t make the recommendation, perhaps someone else will.

Summer vacation for everyone!

sunflowersSummer is here, and for many, especially those on a school schedule, this means summer vacation! Families often take this opportunity to travel together, have adventures, and spend some quality time together.

Travel is one of those things which is stressful and overwhelming for many people, but until today, I never really thought about the added burden travel could bring when one of your passengers has special needs. What if you have a child in a wheelchair? Or a child with autism? What if your child has a feeding tube? Or has visual impairment? Travel and vacation has just become much more complicated, because in addition to the typical itinerary and accommodations, you now need to research and plan for many other things specific to your family’s needs.

This morning, I was alerted to the existence of a really cool website developed to help families navigate travel with individuals with special needs. Started by a mother of two kids, one with special needs, Special Globe has tons of resources including helpful information from the CDC and TSA, tips and tricks, and even notes about how accessible various attractions are in different vacation spots.

While I know this post isn’t as applicable to most, chances are, you know someone who might benefit from this information. Pass it around! Have a great summer!

Tay-Sachs and BRCA Testing on the Same Day?

Can you also test me for BRCA while I am here already?” asked my 21 year old patient. He was in my office about a month before he was planning on proposing to his girlfriend. He came because he knew his sister was an FD carrier and he wanted to get screened for this condition as well as others that are common in Ashkenazim, since if both he and his partner were found to be carriers of the same disease, they would have a high risk of having an affected child (25% with each pregnancy).

I had just finished counseling him about the diseases we would be testing him for and the reproductive options for carrier couples, when he glanced at the BRCAcommunity study brochure that was lying on my desk. The cover reads:  BRCA testing is right for some…Is it right for you?  That was when he asked his question that many others also have asked since. “Can you also test me for BRCA while I am here already?”

Testing for BRCA is not like testing for Tay-Sachs, but I understand why the question was asked. (Note: for the remainder of this blog, I will use Tay-Sachs as the example of preconception testing, but testing is recommended for a much larger panel of diseases). We talk about how certain genetic conditions are more common in Ashkenazim.  We talk about Tay-Sachs disease and BRCA-related Hereditary Breast and Ovarian Cancer (HBOC) syndrome as examples of this all the time. And we advocate for genetic testing before contemplating a pregnancy, so why not kill two birds with one stone and do it all at once?

The answer is complex and related to the differences in the conditions themselves. The first difference has to do with the nature of the diseases; that is, Tay-Sachs and the other common diseases for which we test preconception are diseases that occur in infants or young children. Some of the diseases on our panel end in early death and others progress throughout one’s lifetime, but they are all chronic diseases that burden the affected individual for the long-run. HBOC is in a different league since it is adult-onset. We don’t see BRCA-related cancers in infants or young children.

Furthermore, if a child has inherited both non working copies of the genes that cause Tay-Sachs, that child will have Tay-Sachs. However, if someone has inherited a genetic mutation in BRCA that causes HBOC, that person is at increased risk to develop a related cancer, but it is not a guarantee.

The reason we recommend carrier screening for Tay-Sachs and diseases in that category is so that couples could be made aware of their risks to have a child with a debilitating disease before they conceive or early in a pregnancy, and may make reproductive and life decisions based on their risks. Does information about adult-onset diseases—that are not even guaranteed to happen—fall into the ‘want to know before contemplating a pregnancy’ bucket?

The second difference between Tay-Sachs and HBOC has to do with inheritance patterns. Tay-Sachs is transmitted in an autosomal recessive manner; that is, carriers are not at risk of developing the disease themselves, but their offspring are at risk if both parents are carriers. HBOC is an autosomal dominant syndrome, which means that if someone carries the mutation, he or she is at increased risk to develop the disease (not just the offspring). In addition, each of his or her kids have a 50% chance of inheriting the mutation and its associated cancer risks—regardless of the other parent’s carrier status. When going to learn about your potential children’s health in a preconception genetics appointment, would you also be ready to learn about your own health risks?

My two points about the differences between Tay-Sachs and HBOC are pretty strong, and because of them, I do not know of any reproductive genetics practices offering BRCA testing in the preconception realm. The one argument that supports preconception BRCA testing is that if a couple knew that one of its members carries a mutation, this couple might consider doing pre-implantation genetic diagnosis (PGD) to select against BRCA-mutation carrying embryos when planning their families.

So while PGD is an option for BRCA carriers, we generally do not offer preconception screening for BRCA to all those of Ashkenazi descent (an exception could be someone who has a known mutation in a close family member, or someone with a strong family history of cancer). The counseling for BRCA is very different than it is for Tay-Sachs, and genetics professionals do not believe that a session about preconception carrier testing is the appropriate environment to bring it up. I wonder if our patients would agree.

Making Histories: Tree of Life, A BRCA Conversation

Guest Blogger, Sherry Kabran, writes about her amazing new project, Tree of Life, A BRCA Conversation http://www.treeoflifebrca.org:

tree of lifeWhile in mourning, some try to cope with their emotions and loss by writing journals, going to support groups, blogging, running races, attending daily minyans, even starting cancer oriented organizations.  The women in my family found their own ways to accept the loss of Carolyn Raizes Davis, mother and sister, but together we created Tree of Life:  a BRCA Conversation guide for Passover, Shabbat and Rosh Chodesh.

Each guide helps Jews of Ashkenazi descent understand basic facts about hereditary cancer risks from BReast CAncer gene mutations.  The highlighted message is that every family should create a family medical tree, look for red flags and consider genetic testing, if appropriate.  The guides provide a Jewish setting in which to start a serious conversation that might save the 1 in 40 Jews of Ashkenazi descent, who unknowingly has a BRCA gene mutation.

This family project was our suggestion to FORCE (Facing Our Risk of Cancer Empowered) to further reach out to the Jewish community with a teaching tool.  How could we not try to help?  Carolyn passionately believed in teaching the community about BRCA gene mutation risks and worked closely with The Methodist Hospital doctors in Houston, Texas, to develop an educational program.  Her legacy was EDUCATE anyone who will listen!

My younger sister, Francine, and I decided Passover was an ideal time to have a multi-generational discussion about gathering medical histories.  We know about oranges and coffee beans on the Seder plate.  How about a tree branch, to represent the importance of medical family trees?  Each guide provides: an introduction to start the conversation, a BRCA branch symbol of family trees, a choice of videos, a medical history form to gather health information, Debbie Friedman’s Mi Sheberach prayer and suggestions for next steps.

Of course I googled “Passover & family histories” and found Chani’s post suggesting families do just that, at the Seder table!  Her blog is incredibly informative and thought provoking.  Plus, she told me to take the conversation guide idea and run with it.  Thank you, Chani, for your encouragement.

The Davis/Raizes/Kabran family hopes readers will explore the guides (http://www.treeoflifebrca.org) and decide to use one during family gatherings.  Please tell us about the experience. Also, help us save lives by sharing the website on Facebook and forwarding the free downloadable guides to family members, friends and community leaders (Jewish organizations are beginning to offer BRCA educational programs).  Your suggestions for use of the guides and ways to publicize would be greatly appreciated.

Thank you,

Sherry Kabran:   treeoflifebrca@gmail.com

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