What Does Alzheimer’s Have to Do With Adoption?

Sometimes I wonder if knowing my medical history is a blessing or a curse.

Watching my dad go through Alzheimer’s disease has made me wonder if I will go that path as well. A new report in Annals of Neurology links Alzheimer’s with rosacea, a skin condition which I’ve had for several years. I’m at the point where I understand that this Onion article about trying to hide normal memory issues (so my kids won’t put me in a home) is both really funny and poignantly close to the bone.

I have many things for which to be grateful: preventive health care, good medical insurance, loving family and friends. I can’t Iive my life in fear. I am seizing the day (the moment!) with intention and joy, as much as possible. “After the ecstasy, the laundry,” says Buddhist writer Jack Kornfield. There’s plenty of mundane to go around in the midst of enlightenment.

About that enlightenment: I have some sense for my genetic possibilities. It gives me options to prepare, to inform my doctor, and to make decisions as best I can.

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That reality gives me a tremendous advantage over way too many adopted people, who are denied their own medical histories.

Though I never knew her, I enjoyed the writing of Susan Perry (a mom of two and grandmother of six, a retired teacher in New Jersey) who wrote a thoughtful blog called Family Ties. She was adopted as a baby. She died just over two years ago from melanoma, less than a year after connecting with her biological sisters and finally learning about her own genetic history. It was too late for her to engage in preventive care. While it’s wretched consolation, her daughters and her grandchildren now have more medical knowledge about their own histories as well. Susan was a strong advocate for adoptee rights, and her daughter continues to post on her blog, providing valuable insights.

As Von of the highly regarded blog The Life of Von rightly pointed out to me, adoptees don’t “deserve” to have access to their medical histories, for themselves and for their children and grandchildren. It is their right. It just seems so obvious, but we still–in 2016–limit the access of human beings to their own information. It’s an astonishing failure of civil rights.

There was never any legislated guarantee of privacy given to birth parents who placed their children for adoption. Today, some 20 U.S. states allow some form of access by adoptees to their own birth certificates. Several state laws have restrictions, including veto power by birth parents.

The saliva sample tube for DNA 23andme.com testing

Many adoptees use Internet search services and other means to find their information. Some use DNA testing which can help locate cousins, siblings, and sometimes parents. It is possible to get medical/genetic history from DNA tests, but it is far better (and a basic human right) to be provided with the correct information about one’s actual history.

Of course, it’s not just knowledge about physical health that is vital, but mental health as well. Knowing the history of depression (or schizophrenia, anxiety, alcoholism, addictions) in one’s family, for example, can be life-saving.

Being adopted should not mean being denied access to life-saving information. Yes, I find it sobering to know my medical history sometimes. I don’t take it lightly, nor for granted, especially knowing that thousands and thousands of people don’t have the option to know, to take proactive steps to care for themselves, and to pass the information on to their healthcare providers and their family.

 

Further information:

(Birth Mother) First Mother Forum

Adoption and Birth Mothers: Adoptee Rights

Bastard Nation: Adoptee Rights

The Declassified Adoptee

American Adoption Congress

 

“Understanding Why Adoptees Are At Higher Risk For Suicide”

Talking about suicide is hard and uncomfortable. Talking about it in connection with adoption–which often has much joy but is more complex than people realize–is challenging. And we need to talk, and keep sharing information and resources.

I am pleased to share with you my article “Understanding Why Adoptees Are At Higher Risk For Suicide,” published today by Forefront, a University of Washington collaboration of the UW School of Social Work, UW Communication, UW School of Nursing, and UW College of Education.

My three main points in the article are these:

Adoption is a trauma.

Adoptees often don’t know their medical histories, which may include depression and other illnesses.

Adoptees don’t want to upset their adoptive parents with concerns about depression or what could be seen as ingratitude.

I know people I love more than words can say who have considered. and attempted, suicide. I do not presume to speak specifically for them in my writing, because their stories are theirs to tell–or not.  Because of my experiences, and because of hearing about the suicides (or attempts) of adoptees, I have felt compelled to speak out. I hope other voices, especially those of adoptees themselves, will come forward as well and be welcomed, even as we struggle together.

This is a clarion call to adoption agencies and organizations to make suicide awareness and prevention–especially as it relates to adoptees–a fundamental part of their training and adoption-related services. I mean no disrespect to birth/first mothers, fathers, and family members, as they also have genuine struggles. My focus here, however, was on adoptees.  I have heard just this week about 2 12-year-olds, boys, Ethiopian adoptees, in different states, who committed suicide in August. I heard recently from an adoptee of the Baby Scoop Era, now in her 50’s, who has struggled with suicidal thoughts for decades.

September is National Suicide Prevention Month. September 10 is World Suicide Prevention Day. Please read, learn, share, and speak out.

My thanks to Forefront for publishing my article.

May we all find healing and hope, and reasons to live.

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Suicide and Adoption: We Need to Stop Whispering

Update: For resources about adoption-related suicide awareness and prevention, here is information.

Just this morning, as I was getting ready to post this, I read on my Facebook feed about a 28-year-old Korean adoptee who died by suicide two days ago. I did not know her. She was the same age as my oldest son, and she had a daughter about the age of my granddaughter. May she rest in peace.

I am holding in my heart a 20-something-year-old adoptee, adopted with a biological sibling into a huge adoptive family (more than 25 kids). He is overwhelmed all the time these days, as a result of things he has done and has had done to him. He wants to go home, though he’s not sure any longer where “home” is. He is in great need of mental health services, and is intently resisting help. He is teetering on the edge of suicide.

Yes, I know most adoptees do well. But this one is struggling, and it appears to be the result of events after he was adopted. His adoptive family has abandoned him.

My two most shared blog posts (shared over 1000 times on Facebook) are “Does ‘Adoption’ Really Equal ‘Trauma’?” and “Fisseha Sol Samuel: Irreplaceably Marvelous.” Both deal with a hard side of life: trauma and suicide. The first post says, yes, adoption is trauma, and there is a spectrum of response to it. The second post was written last October following the suicide of an Ethiopian adoptee who had previously exhibited no symptoms of depression, and whose death was likely (we will never know for sure) the result of a sudden, triggering, traumatizing event in which he was overwhelmed and impulsive. Fisseha’s mother, Melissa Faye Green, has written several powerful posts as she sorts through her son’s death.

Here is an excerpt from my post about Fisseha:

“There is sobering research that says that adoptees are four times more likely to attempt suicide. It’s here in Pediatrics, the journal of the American Academy of Pediatrics. Not lightweight stuff, and even more startling in that the mean age of the 1000 participants was about 14. Out of the total group, which included adoptees and biological children, 56 had attempted suicide; 47 of those were adoptees.”

I am holding in my heart a 14-year-old Eastern European adoptee, who is too familiar with drugs and sex, who is loved deeply by her adoptive parents, who is in various therapies, who cuts herself and threatens suicide often. She can be a bubbly, sweet teen, and also a deeply frightened and frightening out-of-control mystery.

Yes, her struggle may not be the result of being adopted, but rather of what happened to her before she was adopted. She is struggling, and those who love her are deeply worried.

No one enjoys thinking of adoption as a trauma. No one likes to talk about suicide. And, I know: most adoptees–most people generally–don’t consider or die by suicide.

That said, let’s start thinking and talking about the link among adoption, trauma, and suicide. Let’s insist that suicide awareness be a part of pre-adoptive parent training classes. Let’s demand that anyone who claims “adoption competency” in their therapeutic practice is extremely knowledgeable about suicide. Let’s actively and shamelessly share resources to prevent suicide. Let’s request workshops like “The Presence of Suicide in Adoption” as a topic at adoption-related conferences. We need to stop whispering about suicide and adoption, and to speak about it with clarity and without fear.

I am holding in my heart a 16-year-old adoptee from India, beloved by her adoptive family, mentored by an adult Indian adoptee, raised in Minnesotan suburbs, who killed herself about a month ago.

Yes, she struggled, and also was offered and received help. She may be at peace now, though all those left behind are filled with sorrow and questions.

These 3 adoptees are among the reasons that we must talk about the role of trauma and suicide in adoption.

A few weeks ago, I was at the national conference of the American Adoption Congress. The main legislative advocacy effort of the AAC has historically been access to original birth certificates, a means of allowing adopted persons to know who they are, a basic human and civil right.

What is the connection between suicide and the AAC’s legislative efforts? Well, there may be a genetic component to the likelihood of suicide. Access to one’s medical and mental health history–too often denied to adopted persons–could be a matter of life and death. Knowing about a history of depression or other mental illnesses in one’s family could mean proactive treatment and interventions. It is yet another reason that closed records are unfair, untenable, and wrong.

Here are links to two medical journal articles:

Genetic and Familial Environmental Effects on Suicide – An Adoption Study of Siblings

Genetics of Suicide: An Overview

Many adoptees are adopted into families where the adoptive parents are well off financially, have attended college, and are in highly regarded professions.The adopted children go to excellent schools and often have wonderful opportunities. Still. Take a look at “Best, Brightest–And Saddest?”, in which Frank Bruni reflects on the “suicide contagion” among teens in Palo Alto and elsewhere who are under pressure to succeed academically in highly competitive situations. The article cites a CDC report that says 17 percent of American high school students considered suicide in 2012. Eight percent said they’d attempted it.

Suicide, of course, feeds on trauma and depression, and does not discriminate based on economics and education. While the “suicide cluster” among high schoolers in “epicenters of overachievement” is discussed in the New York Times’ article above, there has also been a similar tragedy–which has not made national press–among young people in Seattle. Three young men, ages 18, 18, and 20, who were students at the Seattle Interagency Academy (SIA), died by suicide, within a 4 month period in the last year. SIA works with at-risk youth, who have struggling families and who are often homeless or on probation. Listen to an excellent podcast with the SIA principal here.

Coincidentally, there was a string of 7 suicides by adolescents on the Pine Ridge Indian Reservation in South Dakota around the same time. No one is quite sure why this is happening, though bullying and grim prospects for the future seem to be significant.

I don’t know if any of these young people had spent time in foster care or were adopted. Certainly, though, their life paths echoed those of many young people whose families are struggling mightily, and those struggles are often the reasons that children land in foster care and/or adoption. Racism and micro-aggressions can significantly affect the mental health of transracial adoptees; I wrote about that reality here. Even adoptees placed as infants in same-race families can struggle with loss, grief, identity, and feelings of not belonging. It’s clear that many of these challenges manifest in adolescence.

This is all daunting tough stuff. I am seeking a balance: to acknowledge suicide prevention as a goal about which we can all speak in the adoption community, not over-reacting, being pro-active, and supporting each other. My next post on this subject will give some resources.

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Light Through Trees, Forest near Lake Langano, Ethiopia © Maureen McCauley Evans

Susan Perry, RIP: How Lucky We Were to Have You

I never met her in person, but I consider Susan Perry a friend, and I mourn her death today. Like me, she was a mom, a grandmother, a teacher, a writer. Unlike me (an adoptive parent), she was an adopted person, denied her original birth certificate and her medical history. Had she had access to her medical history, perhaps we would not be grieving today. That, to me, is a sobering reality.

She wrote a wonderful blog, Nanadays.blogpost,com. She wrote about her beloved family, two children and 6 grandchildren. She wrote about finding her two sisters just last September. She wrote about the basic human right all people should have to their own birth certificates. She testified about the adoptee birthright bill in New Jersey, writing about it in her blog: “Every adopted child is worthy of truth and respect, and, as an adult, should certainly be entitled to equal treatment under the law.” She was a vital voice with Lost Daughters, who called her “our friend, our colleague, and, most importantly of all, our sister.” She was involved with the New Jersey Coalition for Adoption Reform and Education (NJCARE), and with the Adoptee Rights Coalition. So many people will miss her.

In recent weeks, Susan’s daughter wrote on her blog, expressing eloquently the vibrancy and depth with which her mother lived her life. I wrote about Susan last October, in my post Information and Access: An American Civil Right Denied. I send my condolences to Susan’s family. She will be missed, and many of us will carry on her legacy to provide basic civil rights to adopted people.

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You, 23andme: An Update

On December 6, 2013, 23andMe posted a notice saying they are suspending health-related genetic tests to comply with the FDA’s regulatory review. People who bought the tests before November 22, 2013, will still have access to their results. 23andMe hopes to offer health-related results in the future. The ancestry-related genetic tests and raw genetic data will still be available now. Click here for the complete notice.

On one level, the many genetic testing and ancestry services that currently exist are amazing and are opening incredible doors. For a good overview of Genomic Testing from the Centers for Disease Control and Prevention, click here.

On another level, the first solution should be access to original birth certificates (OBCs) that would allow adopted people the basic civil right to know their own histories. (I’ve written about the need for OBC access here.)

Until our legislators come to their senses and allow adoptees this basic human right, genetic technology at least sheds some light on otherwise dark corners.

I’ve written several times about DNA testing and its value to adoptees, first/birth parents, and others who have gaps in their histories. You can read  “DNA, Pandora’s Box, and Answers?”, “DNA Testing, Adoption, and Outrage,” and DNA Testing and Adoption: Filling In Many Missing Pieces.”

One of the most popular services, 23andme, provides a range of services related to genetics. As the website says, you can discover your ancestral origins and trace your lineage and find out what percentage of your DNA comes from populations around the world (East Asian, sub-Saharan African, British Isles, etc.). There is a family tree tool that allows connection with genetically-related relatives, and some astonishing connections among first/birth families have been made that way.

23andMe also allows you to find out inherited traits (such as lactose intolerance and male pattern baldness), carrier status of certain diseases (for example, cancer), health risks, and drug responses. It doesn’t include all diseases or all health risks, but it does provide some substantial information.

As a result of the genetic health testing service, 23andMe recently received a warning letter from the Food and Drug Administration.

You can see the complete letter here.

Here is an excerpt:

“The Food and Drug Administration (FDA) is sending you this letter because you are marketing the 23andMe Saliva Collection Kit and Personal Genome Service (PGS) without marketing clearance or approval in violation of the Federal Food, Drug and Cosmetic Act (the FD&C Act)…

(Y)our company’s website at http://www.23andMe.com/health (most recently viewed on November 6, 2013) markets the Personal Genome Service for providing ‘health reports on 254 diseases and conditions,’ including categories such as “carrier status,” “health risks,” and “drug response,” and specifically as a “first step in prevention” that enables users to “take steps toward mitigating serious diseases” such as diabetes, coronary heart disease, and breast cancer. Most of the intended uses for PGS listed on your website, a list that has grown over time, are medical device uses under section 201(h) of the FD&C Act. Most of these uses have not been classified and thus require premarket approval or de novo classification, as FDA has explained to you on numerous occasions.
Some of the uses for which PGS is intended are particularly concerning, such as assessments for BRCA-related genetic risk and drug responses (e.g., warfarin sensitivity, clopidogrel response, and 5-fluorouracil toxicity) because of the potential health consequences that could result from false positive or false negative assessments for high-risk indications such as these. For instance, if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.

…The risk of serious injury or death is known to be high when patients are either non-compliant or not properly dosed; combined with the risk that a direct-to-consumer test result may be used by a patient to self-manage, serious concerns are raised if test results are not adequately understood by patients or if incorrect test results are reported.”

Health literacy is an issue in America, where people fail to follow instructions, misunderstand dosage, or get confused about a diagnosis. I’m sure there is some validity to the FDA’s position, though I also believe that most people who would use 23andMe would also consult with a doctor, who would then order additional tests.

Many 23andMe lawyers have no doubt been working hard in response to the letter. The information on the web page currently is vague:

23andMe

press release

23andMe Statement Regarding FDA Warning Letter

“We have received the warning letter from the Food and Drug Administration. We recognize that we have not met the FDA’s expectations regarding timeline and communication regarding our submission. Our relationship with the FDA is extremely important to us and we are committed to fully engaging with them to address their concerns.”

New Yorker article this week notes that “many doctors who want medically relevant genetic information about a patient get that information by asking her to sign up with 23andMe. Meanwhile, this company’s cheap, widespread testing, which has gathered genetic, ancestry, and health data from nearly five hundred thousand people, has created a rich medical source of risk information.”

It’s been a huge source of information for adopted adults and for first/birth families in terms of creating connections, as well as allowing them to fill in previously missing information on medical forms. “Unknown” is no fun to post on a medical history.

At this point, 23andMe is still taking orders for its kits, still posting numerous disclaimers  about test results, and still urging consumers to see their doctors. Lawyers are looking into their response to the FDA. A change.org petition has been started. A petition to the White House is up and running. 23andMe has 15 working days from November 22 to respond to the FDA letter.

In addition to 23andMe, here are some other sites to explore and consider:

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

Let’s hope that 23andMe will be allowed to continue safely providing this revolutionary, life-changing service, to those who have few other options of accessing medical information. Let’s hope that other accurate, cost-effective services become available as well.

And let’s continue to work toward  adoptees having access to both their original birth certificates and their own medical history.

DNA Test kits from 23andme.com

DNA Test kits from 23andme.com

DNA Testing, Adoption, and Outrage

Imagine a room with a bunch of nice, older ladies. They are mostly smiling.  A few are cranky. I’m in there too, along with other grandmas. (It still shocks me I’m a grandmother, but Zariyah will be 7 in October, and I’ve come to terms with it.  Best thing ever.)

Imagine that some of these nice, older ladies are fundamentally denied two basic civil rights: access to their own original birth certificates, and knowledge of their medical histories. Imagine that your mother or grandmother has no idea what contraindications exist for medications. Imagine your grandma’s painful medical condition that could have been easily prevented with proactive treatment.

I tend these days to first think of adoptees as being not children, but young people, because of my own young adult children. I need to be more inclusive in my thinking and acknowledge more fully the adoptees in their 40’s, 50’s, 60’s, 70’s, and beyond. That’s especially relevant around medical histories.

I posted yesterday about DNA testing and its value to adoptees. I received an absolutely on-point comment from TAO, a blog which you should follow. Now.

Here’s a quote from her comment:

“I am glad there is genetic testing available for many of the same reasons you note and while I don’t disagree with the statement “Finding out about potential future medical conditions could be frightening.” yet, I can’t begin to tell you how frightening actually living through a medical emergency without FHH is, and that reality plays out for adoptees more often than people want to believe.”

Family Health History, or First Family Health History, should be a given. TAO (The Adopted Ones, from the Baby Scoop era) is so right, and has put my delicate statement “Finding out about potential future medical conditions could be frightening” into the light of day where I now say:

Denial of medical histories is an outrage. Knowledge of one’s medical realities is so taken for granted by those of us who don’t have to think twice about it.

Knowledge of one’s medical history can be a matter of life and death. Certainly that knowledge can hugely impact the quality of one’s life.

And yet there are hundreds of thousands who ARE NOT ALLOWED to have this information.

Yesterday I was polite, and provided DNA testing information as if I were giving out lovely little flowers to brighten your day.  I have no doubts that DNA testing is valuable, and provides great information.

But today, I am angry. US and international adoptees, whether they were adopted today or 75 years ago, should have access to their original birth certificates: there remains no doubt in my mind about that. They should also have as full, accurate family health history as possible. It’s an outrage that they don’t, and that they have to struggle to get it.

I would love to see more adoptive parents, grandmothers, grandfathers, adoption attorneys, adoption agency workers, and medical professionals joining in outrage.

TAO noted also in her comment to me that “not all genes have been found for common diseases let alone the estimated 7,000 rare diseases that affect 1 in 12 Americans…genetic tests are a poor substitute for a good FFH.”

Excellent point. Genetic tests are helpful on some level, no doubt. But genetic tests, as they exist now, are no substitute for a thorough, accurate first family health history.

From TAO’s “About” page:

“As you will notice as you read our posts both of us were impacted in different ways by the lack of current updated family health history because of being adopted.  While having the family health history may not have changed the course of our diseases – the knowledge in my case may have prevented two life threatening events, and for shadowadoptee the knowledge that she would go blind sure would have been nice to know…”