The Anna Kavanaugh Charitable Foundation
Contributor Blogs

(Division) Adoptee Rights

October 23rd, 2012
Submitted by: Lisa Moody RN 

Blog Two of Lisa's Adoptee Rights Series
Understanding Genetic Disease

As we explore the importance of having knowledge of one’s own family medical history, it’s also helpful to have a general understanding of genetic disease.  A genetic disorder occurs whenever there is a mutation or alteration of a gene which prevents that gene from developing normally.  Faulty genes can lead to the development of disease which may then be passed from parent to child.   Sometimes faulty genes occur randomly and, oftentimes, a combination of heredity, lifestyle, and environment contribute to genetic disease.  Certain ethnic groups are genetically predisposed to particular conditions as well.

There are four major classifications of genetic disease:  single gene, multifactorial, chromosomal, or mitochondrial.  Cystic fibrosis, a life-shortening and fatal disease, is just one example of a single gene mutation that occurs when both the father and mother are carriers of the same defective gene.  A multifactorial disease occurs when there is either a defect in multiple genes or because of the effects of mutated genes combined with lifestyle and environmental factors.  For example, genes that influence breast cancer risk have been found on chromosomes 6, 11, 13, 14, 15, 17, and 22.  ( Additionally, chronic diseases such as diabetes, heart disease, and hypertension often have a multifactorial genetic component as well.  Chromosomal diseases typically occur when there is an abnormality in either chromosome number or structure, such as in Down syndrome or trisomy 21, where a child inherits one extra chromosome.  Finally, mitochondrial diseases occur when there is damage or dysfunction of the mitochondria, which is the part of the cell that generates cellular energy.  Cellular energy is essential for sustaining life as well as controlling cell cycle and growth. Without energy, cells become damaged and entire body systems begin to fail.  When that happens, the individual’s life becomes severely compromised.

If there is a prevalence of a particular disease amongst multiple individuals in a family, there is a good chance that a defective gene is being passed down.  When an individual is familiar with their biologic medical history, they can seek early screening and obtain earlier treatment.  It is far easier and less costly to control and manage certain conditions early in the game, rather than trying to play “catch up” later on.  However, for an adoptee whose family medical history is unknown, there is no past to draw upon, so they simply don’t know what they should be looking for. 

Race often plays an important role in genetic disease.  For example, sickle cell disease is more prevalent among African Amer
icans, Tay-Sach’s disease is more likely to occur among Ashkenazi Jews, Caucasians have a 1/25 chance of being a carrier of cystic fibrosis, and those of Mediterranean descent are at a higher risk of carrying a defective gene for Thalassemia.  Therefore, it’s important to know one’s ethnic background when considering possible genetic diseases to screen for. 

Knowing hereditary disease risk empowers individuals to be in control of their health.  It gives them the opportunity to begin lifestyle changes and ensure more frequent medical check-ups, if they desire.  It allows their healthcare provider to be more focused and thorough during physical exams.  In some cases, prevention of disease may be possible.  If prevention is not possible, early treatment and management can decrease the severity of symptoms and allow for a longer, better quality of life.  Furthermore, if there is a known genetic risk, a couple contemplating parenthood can elect to seek genetic counseling so that they may know their chances of potentially passing a defective gene to any future offspring.  Without providing a family medical background, a birth mother sends her baby out into the world, uniformed and unarmed.  This means risking missed opportunities to seek earlier medical care.  It can also mean fewer options to consider once care is received.  Unfortunately, the adoptee’s choices are limited by the decisions of others.

Awareness of heritable diseases on your family tree can potentially save your life.  Adult adoptees and parents of minor adoptees should not be denied the right to know what to look out for.  If the birth mother chose, for whatever her reasons, to give her child the extraordinary gift of life, the next best gift is to offer as much family medical and racial information as possible.  No one should be left in the dark about something as important as their health.

Lisa Moody, RN

                                                                                (Division) Cyber-Abuse

August 27th, 2012
Submitted by: Dani K. 

The Online Ease of Cyber-Bullying
 the Power of a Cyber-Abuser

The media has become a significant influence in our everyday lives. We depend on social media sites like Facebook or Twitter to keep us in contact with friends and family, to meet new people, or interact with like-minded individuals about subject matters important or entertaining to us in a community of our choosing. We religiously update our statuses and pictures, allowing others to know what is going on in our daily lives. This has become as predictable a routine for most of us as is brushing our teeth or feeding our pets. The internet can be a beautiful thing, connecting long-distance family, announcing a birth, sharing wedding pictures, or even for finding or lending support in difficult times. Unfortunately though, the internet is public. This exposes us to strangers, and the harshness, cruelty and criminality they can abuse us with when they abuse the internet.

Being in high school I see bullying and abusive behavior every day. You always see in the movies that if a fight breaks out on a school campus there will be a crowd gathering closely behind to watch. The responses of the crowd feed the bully's ego and make them feel that what they are doing is right. But within the internet domain, the bullying doesn't stop when you go home. It follows you and can feel inescapable to a victim.

The popularity of the internet makes cyber bullying easier to accomplish than the classic "school yard bullying." Over 40% of kids have been bullied online, and it happens to adults too. The anonymity and impersonality of the internet helps build a wall between the bully and their victim. The bully cannot see the direct impact of their actions on the victim. Sometimes this causes the bully to go out of their way to get the response that they thrive on. Bullies also thrive on getting this response through an audience, and the internet provides the ideal public area for this audience.

This leaves the questions, would the bully still feel successful without the audience? Are the bystanders just as guilty as the bully for not stepping in to stop it?

I think that if you see this bullying taking place, in person or online, and you do not step in to stop it then you are as much to blame as the bully. Being an audience member is just as dangerous as being the initiator because you are feeding into the bully’s ego and making them feel that what they are doing is right.

It is never right
I wanted to begin blogging about this because I would like to make a difference and raise awareness about cyber-bullying. In the future I hope to accomplish this in any way I can.

Dani K.

(Division) Adoptee Rights

August 9th, 2012
Submitted by: Lisa Moody RN

The Importance of Knowing Our Family
Medical History

A few months ago, I had an appointment with a new doctor in a new clinic.  As I checked in, I was handed a clipboard with a questionnaire attached as part of my new patient registration.  I answered the normal, expected questions such as name, birthdate, address, gender, emergency contact information, lifestyle, known allergies, medications currently taken and so on.  I was also asked questions about my family medical history.  Even though, I don’t know every health issue that my relatives have ever dealt with, within a minute or two, I came up with a pretty impressive list.  I was able to report known family illnesses as well as causes and approximate ages of death for several family members.  Lately, I’ve tried to imagine what it would be like from the perspective of an adult adoptee or of an adoptive parent of a child presenting with some unusual symptoms.  How would it feel to read those questions and know little or nothing of my family medical background or that of my child?  Would I care?  Would I desire to know what could potentially be coming down the pike, genetically, for me or my child?  How would it feel to have just one more mystery to add to my existence?

So, why do healthcare practitioners collect this information anyway, unless it serves some worthwhile and beneficial purpose?  A good, detailed genetic medical history includes the age and health status or age and cause of death of immediate blood relatives such as parents, grandparents and siblings.  This accumulation of data may have genetic significance for the patient, particularly if there is a family history of illnesses such as high blood pressure, heart disease, diabetes, sickle-cell anemia, seizure disorders, kidney diseases, birth defects, mental illness, allergies, specific cancers, as well as a host of other genetic diseases and disorders.   An accurate and complete health history provides a picture of a family’s past and present health.  With the information obtained, a genogram, which is a type of medical family tree, can be constructed which provides clues to medical conditions that may run in a family.  A genogram enables a healthcare provider to see patterns of family diseases which can then help the healthcare professional to determine whether an individual may be at risk for a particular condition.  This information can be used to assist a provider in determining a treatment plan that can prevent, slow down, or even halt the progression of some inherited illnesses.   However, it should be noted that just because a person is at a higher risk of inheriting certain genetic conditions, does not mean that the individual will necessarily inherit them. But knowledge of family medical history can help the healthcare provider to be on the look-out for specific signs and symptoms of family disease, as well as offer specific pre-screening tests, if the individual desires, so that early intervention may be initiated when needed.  Knowledge of genetic diseases and disorders helps the physician to be extra mindful while conducting a physical examination as well as when he or she is considering which medications to prescribe.  Did you know that some medications need to be monitored more carefully if there is a family history of a particular medical condition?   For example, extreme caution should be used when considering certain blood pressure medications if there is a family history of angioedema.  In addition, certain migraine medications would be monitored more vigilantly in individuals with a family history of irregular heart rhythms. Not knowing one’s genetic background presents a challenge in that doctors don’t know what to look out for.  Because of this, they conduct more frequent check-ups and prescribe more tests, both of which can be quite costly, time-consuming and may, otherwise, be unnecessary. 

Early detection of genetic factors can be life-saving. Current, past, and biologic medical history all play an important role in a healthcare provider’s physical assessment.   Omitting any part of the initial assessment provides and incomplete overall picture.  Many adult adoptees and adoptive parents are prevented access to information that most other individuals have… information that could keep them healthier longer or save their life!  As a registered nurse, skilled in collecting a detailed medical history, I know the importance of being able to put together as many puzzle pieces as possible.  As a mother, it pains my heart to think how powerless I would feel if I did not have access to information that would allow me to obtain the best prevention or management of any medical condition that my child may be at risk for and, essentially, provide her with the best chance of a healthy life.  Everyone deserves the right to know this information.  

Over the next several months, I will be addressing some of the issues that adoptees and their parents face in the fight for their right to know their medical background.  What are the issues?  What are the obstacles?  What needs to be done?  Family medical history does not need to be a secret.  With awareness, education, conversation, and ultimately, action, we can bring more attention to this issue and help bring basic health rights to everyone.

Lisa Moody, RN

(Division) GMO

August 6th, 2012
Submitted by: Netta Jean Atwell

Take Action.
Take Responsibility.

With a substantial increase in media attention, more and more people are becoming aware of what is happening to our food sources and how large corporations such as Monsanto and Dupont are genetically altering the very DNA of what we eat. And they are doing it without any truly independent or disclosed human trial studies, and without regard to what this may be doing to our own DNA and health. But most of us feel helpless and aren’t sure of what steps we as individuals can take.

The first step is to educate yourself and others about what is happening. Read an interesting expose or article about what is happening within the GMO industry or politically, then pass it on so others that may not have access to your sources can read it, too. Make it a goal to learn as much as you can about the issue; knowledge is power.

Next, use your knowledge to get involved; meet with like-minded people and groups and discuss the issue. Sign petitions or start your own to make your elected officials at every level know how you feel about this assault on our food sources. We have the right to know whether or not we are consuming a product that has been genetically engineered. We are doing this not only for ourselves but for future generations; they are the ones that will bear the full brunt of genetic altering.

Buy from and support the companies that are offering non-GMO products. Although organic and non-GMO products are somewhat more costly, as more people support these companies the price should go down. Know your labeling and terms. “Natural” does not mean non-GMO but “organic” does. Know the codes to determine if produce is organic and non-GMO.

Become pro-active about what you are consuming. Grow some of your own food but make sure you get your seeds from one of the companies that sells “heritage” seeds and that they certify that their seeds are non-GMO. You don’t have to have huge acreage to do this. Many herbs and veggies do just fine in small plots or containers. Again, educate yourself and start out small, expanding your plants as you feel more competent and knowledgeable. If you have an over-abundance from your garden you might want to learn to can or freeze the overage or trade with others in your area that have different crops.

This is just a short list of what we can do to strike back at those that would like to alter our food and take away our right to know whether or not it has been altered. The most important thing you can do today is to take that first step to become an active, educated consumer. We all have a responsibility to our own health but to meet it, we must be willing to take action.

Netta Jean Atwell