Nutrition, Aging and Disease

CHAPTER EIGHT

Allergy and Respiratory Reactions

PART THREE

ADVERSE EVENTS IN MEDICINE

CHAPTER NINE

Drugs and Adverse Events

CHAPTER TEN

Antibiotic Issues

CHAPTER ELEVEN

Medical Devices and Other Hazards

CHAPTER TWELVE

Supplements and Vitamins

CHAPTER THIRTEEN

Hospital and Surgical Adverse Events

PART FOUR

CANCER

CHAPTER FOURTEEN

The Issue of Cancer

CHAPTER FIFTEEN

Treatments for Cancer

PART FIVE

Genetics and Epigenetics

CHAPTER SIXTEEN

Biomarkers and Mutations

CHAPTER SEVENTEEN

New Therapies Based on Genetics

CHAPTER EIGHTEEN

Benefits and Concerns of Genetic Testing

CHAPTER NINETEEN

The Health Care System in America Today

PART SIX

My Story

CHAPTER TWENTY

Tension

CHAPTER TWENTY ONE

The Terrible Twos

CHAPTER TWENTY TWO

Prelude

CHAPTER TWENTY THREE

Research Quest for Answers

CHAPTER TWENTY FOUR

Rest and Recovery

PART SEVEN

Learning from Experience

CHAPTER TWENTY FIVE

Finding the Right Medical Help

CHAPTER TWENTY SIX

Words of Wisdom

CHAPTER TWENTY SEVEN

Lessons Learned

Epilogue

Additional Resources

Author’s Comments

PART ONE

Modern Day Healthcare

Risks and Benefits

You must do the things you think you cannot do.

Eleanor Roosevelt

The risks of modern health care often outweigh any benefits of the treatment. Your doctors are unaware, uncaring, or so programmed that they cannot see outside the prescribed role playing to realize the damage they inflict upon their patients. It is your health and your life that is being treated; therefore, you must become involved and educated about the decisions made. On national television in 2012, the Agency for Health Research Quality (AHRQ) advertised you must get involved with your care and treatment.

The Food and Drug Administration (FDA) has educated us that alcohol and tobacco rank among the ten most dangerous substances used by the human population in America. But, what you might not know is that half of the 21 drugs pulled from the market in the U.S. for safety reasons since 1995 involved heart complications, a finding that is spurring Congress and doctors to call for closer government review of side effects.

Bloomberg made headlines Sept. 27, 2010 with the news that “recalled drugs tied to heart risk” “spurs a call for FDA review” in the story by Catherine Larkin. The FDA has started a new network called the Sentinel Initiative that will track reports from insurance claims and electronic records. This network requires drug makers to develop plans to educate doctors and patients about side effects of prescription medications.

Notable drugs withdrawn from the market due to dangerous or deadly side effects are; Pondimin for obesity (1973); Seldane, an antihistamine and Vioxx, arthritis (2004); Permax for Parkinson’s disease and Zelnorm for Irritable Bowel Syndrome (2007). After Vioxx was withdrawn, other drugs of this type were investigated due to cardiovascular problems and death which brought on the recall of Bextra from American markets. While some drugs are removed, others like Celebrex now carry warnings only. Other medications side effects may list far more alarming adverse possibilities: blood clotting, stroke, heart attack, severe bleeding, hallucinations and even sudden death. Prescription addictions are increasing at an alarming rate. Don’t think that medications like Ativan, Valium, Xanax and Klonopin given for headache, anxiety, and sleep disturbance can’t cause physical dependence because they can. The meningitis outbreak according to the FDA in November 28, 2012 announced that 500 people have developed a fungal contaminate from spinal injections coming from the New England Compounding Center in Framingham Center. What this tells me is there was inadequate state health control in their monitoring of the facility. It will take years before the lawsuits are settled between the patients, the facilities and the compounding company.

The reports on health care and technology from Harvard Medical School believe that reformers need to take a bottom-up approach and listen to patients. Health care reform initiatives generally take a top-down approach from insurance companies and corporate America. In 2011, I am writing about the health care system as I know it to be; trying to help people has been a life time dedication for me in my health and wellness career. Who am I? I am a nurse case manager with over 50 years of experience in operating rooms, trauma centers, mental and physical rehabilitation administration, etc. While I haven’t seen it all, I have seen, and personally experienced, enough bad medical treatment to know that something has to be done. Only through education and learning to ask the right questions, can you and I protect ourselves from doctors, drug companies, and the government. This book is for you. Through information I have gathered for you, and telling my story along with stories from my contacts, I hope you see the urgency to be proactive in your health care. Now, let’s get started.

CHAPTER ONE

Why Our Ancestors are Important Today

People will not look forward to posterity who never looked backward to their ancestors.

Edmund Burke

Every non-fiction author is called to look back on events and reflect on the purpose of the communiqué, their story, mission and passion in life. We are challenged to dig further, like sifting through the artifacts of a lifetime of experiences, both big and small. Sometimes, we look further and identify a connection with our mother or father, or even a more distant relative. Our mind rubs the proverbial sticks together until a spark is formed and the story unfolds.

In 2004, I became interested in genealogy due to a phone call one morning from my sister, Olivia. She asked, “Have you looked at your birth certificate lately?” I said, “No, I haven’t” and after the discussion, I looked at my birth certificate. My mother’s maiden name, Hutchison, was misspelled. There was an additional ‘n’ in her name, making it Hutchinson. Wow, was my curiosity peaked. That tiny incident kicked off a family investigation which lasted over three years.

During this time, I was on quite an adventurous undertaking. I started by interviewing my siblings and my aunts and uncles plus cousins to develop the branches on my family tree. I learned how to use the library for genealogy research and of course the internet. I learned to research sites that each state promoted to help to locate death records and military records for wars fought. I also learned where my ancestors originated in central Africa trekking all the way to Scotland from my participation in the National Geographic’s Genographic Project. As I dug, I found heroes, skeletons in the closet and met relatives I didn’t know existed. Those newly discovered cousins helped me with finding more branches from their research of our ancestors leading to their membership into the Daughters of the American War (DAR) and subsequently my application from finding my ancestors which allowed me acceptance into the DAR. From this information, many more months were spent accessing files from different Texas archives. It appears that my mother’s family members were primarily farmers and land owners but my father’s families were mostly doctors though there were a few farmers.

I was thrilled finding my heroic ancestors. I located records of my great, great, grandfather William Clark who fought in the Battle of San Jacinto in 1836 and received payment of a 6000 acre donation grant just 8 miles NE of Houston. His son, Horace F., my great grandfather, received a 3000 acre donation grant for his participation in the Texas battles against the Indians with a signed letter from General Sam Houston. When I deciphered the records of the family history from my uncle, Dr. Ben Huckabay, I found so many wonderful stories of their movements from the east coast of America to the crossroads of Lamar County, Texas.

Through my five children, I became more than interested in what traits our families brought to the table, finding many of them worthy of more than a passing glance, especially left handedness in our ancestors. Then there is the red hair and freckles, and the blond hair and freckles. Among my five, two have blue eyes, two have brown, and one has green. All are athletically built as well as gifted.

My children got the freckles from my side of the family, as well as red hair and a full range of eye color. Blond hair came from their father’s side. They got a double-dose of athleticism, competitiveness, and stubbornness. I can track the left-handed and mixed handed trait characteristic to my mother who claimed she was ambi-dexterous. This led to all of my children’s interests in healthy athletic pursuits: tennis, golf, soccer, bowling, softball, running and baseball.

Family traits are important. While most people think about hair, whether it be curly or straight, thick or thin, red, blond or brunette, other traits include straight teeth, leanness, athleticism, and male pattern baldness. And others include eye color, nose shape, temperament, freckles, cleft chin, dimples, and attached ear lobes. Some characteristics can be even more notable, such as artistic or musical talents, intelligence, or disposition.

While physical features are admirable, others can be more interesting to a nurse like me. The trait of handedness interests me first, because I was a competitive tennis player and I found left-handers had a natural serving advantage. Later I conducted research and submitted theories, presentations and writings in laterality, my master’s thesis, with aspects of how handedness is important in learning skills in sports, health and use of implements such as the computer.

My family has also passed along scoliosis, extra fingers, toes and ribs. This is both interesting and a concern for our government researchers as they are attempting to identify the genes causing these variations. There have also been issues with allergies, heart disease and strokes as they have genetically followed my family on both sides, with a few adult onset diabetes and thyroid illnesses thrown in.

My ancestor searches turned from people connections to health connections as I became interested in developing the family tree into a family health portrait with inherited diseases, traits, and ailments. Causes of death became the backdrop on the canvas. I knew my father had died of emphysema and struggled with alcoholism, heart problems and skin issues. My mother died from stroke and struggled with eating problems for years with squamous cell cancer of the jaw causing removal of half of her tongue and lower mandible. Of course, as a nurse, I found this interesting and I started investigating this new angle of genetic inheritance.

Preventative medicine is reported to be the best medicine, but I determine it is more than that. Understanding genetics is the medicine of the future and I think each family should take the challenge. So, my research has moved to educating the public with an opportunity to evaluate and share observations with our community with what I learned of my health and that of my family members, as I know them to be, or have been told by surviving family members.

During this phase of my project, I was working for a company’s Senior Services as the Health Educator/Trainer. I had developed a program to show the importance of this new direction for families, the Family Historian and then to the Family Health Portrait. My supervisor believed there was exceptional merit to this program. The Elder Affairs state organization for seniors, was hosting the annual convention for the Best Practices Convention in February 2007. She suggested I send a query to include this program for the benefit of our state’s large senior population and we received Specialty Presentation status.

We are all curious about the state of our health. Shirley Malcom, author, states “most people are curious about the way their bodies work (and the ways they sometimes don’t work very well).” She challenges us to go beyond the immediate issues and become concerned about the future. Her book Your Genes, Your Choices helps to feed that interest if there are any genetic disorders you wish to follow up from your Family Health Portrait. (1) (2)

Awareness of your health and genetics, and our ability to research and learn makes a powerful tool for dealing with the inevitable challenges we will face in this lifetime. By becoming informed, you move from reactive to proactive healthcare. We can and we will exercise our voice and our choice when it comes to our treatment. (3)

CHAPTER TWO

Genes, Genomics and Genealogy

The only thing we have to fear is fear itself.

Franklin D. Roosevelt

My passion for genealogical research grew and I became a member of the Okaloosa County Genealogical Society, in 2004. I had become adept at using the internet and researching archives of a variety of sources: BYUB.org/ancestors, HHS-Surgeon General’s Family History Initiative, and Texas Archives. The more successful I became excavating websites the more artifacts (death certificates) I uncovered. Each death certificate provided me a new clue in my search for my ancestors and I followed the leads across the States: Texas, Oklahoma, Georgia and Virginia. And then from innumerable visits to the local Latter Day Saints (LDS) Mormon Genealogy Library searching through the UK records from Scotland, I found my ancestors.

While I was uncovering clues from the death certificates, I was also providing long distance care for my sister and sister in law. As I researched their health issues and medications, I noticed the correlation with the diseases and afflictions of my ancestors. I became aware that not only were we passing on genes for red hair and freckles, but diseases and conditions; Coronary Artery Disease, Stroke, Cancer, Emphysema as well. I knew then that our genetics must be shared within the family to take an active part in preventive healthcare.

In the news, scientists were presenting arguments with new evidence on theories of evolution versus creationism. My curiosity was piqued by the recent study indicating Africa as the origin of the human species. National Geographic and Dr. Spencer Wells’ team did a documentary on this theory, Genographic Project and DNA, and it was aired on Public Broadcasting Service (PBS). The information presented grabbed my attention like a wake-up call. I ended up ordering the DVD and watched it several times. Could we all come from Africa? Did we come from Africa? I could see the information in my mind and feel it in my bones. I sent for the DNA swab advertised at the conclusion of the PBS documentary. I had to know. I just had to know. Where did my family originate and what were the trails they followed? I eagerly awaited the results. I received the map showing some of my DNA genetic trail of ancestors from Africa to Scotland.

“Genetic diversity is what makes individuals different and is the raw material of evolution. This material is the basis for the ability of the organism to change to a changing environment. Some scientists believe when populations fall, genetic variation is lost, and the next step is extinction. According to Dr. Spencer Wells, a scientist at Stanford University said “the most original human DNA found today is among the San Bushmen tribe in the Kalahari Desert. Dr. Wells declared we are the most direct descendants of the first humans.” (1)

I was invited to speak on three occasions for various genealogy enthusiasts, both experienced and novice. I showed the introduction period DVD from National Geographic of his research project as part of my opening and talked about the many places they could find information. The participants were energized, and ready to start their own archeological dig. You may wish to have your DNA tested for a “genetic analysis” from the National Geographic Society. (2)

What you are probably thinking now is how will all of these stories and research relate to you in this book? I have felt for years, especially since the 80s, that genealogy and my DNA would be important to me and my family. Little did I know that I would become more than interested in this topic going back to genes and genomics, which is backwards to my way of thinking as your personal genealogy should be first and foremost. (3)

There are many differences in gene disorders, depending if from the mother or the father. If a “disease is autosomal dominant, it means you only need to get the abnormal gene from one parent in order for you to inherit the disease. Autosomal recessive is one of several ways that a trait, disorder, or disease can be passed down through families. An autosomal recessive disorder means two copies of an abnormal gene must be present in order for the disease or trait to develop. Inheriting a specific disease, condition, or trait depends on the type of chromosome affected. It also depends on whether the trait is dominant or recessive. Genes come in pairs. Recessive inheritance means both genes in a pair must be defective to cause disease. People with only one defective gene in the pair are considered carriers.” (3)

“Different races carry defects both in dominant and recessive genes as well as male and female genes carry certain defects. There are estimated to be over 6000 human diseases caused by single gene disorder types of defects. There can be autosomal dominant and autosomal recessive with this type of single gene. With the autosomal dominant disorder there is usually one affected parent, and a 50% chance a child will inherit the mutated gene. Diseases such as Huntington’s and hereditary nonpolyposis colorectal cancer fit into this type of disorder. In the recessive type, the prevalence of cystic fibrosis in Caucasians is 1 in 2,000 and polycystic kidney disease is 1 in 1250 of the Autosomal recessive type.” (3)

You are more than informed now about Familial Hypercholesterolemia (high cholesterol) from numerous stories and studies of Lipitor medication use and how this medication has saved many people from reducing plaque in their arteries causing heart attacks. There is a prevalence of 1 in 500 of high cholesterol in families. Also an Autosomol recessive type, Sickle cell anemia has a prevalence of 1 in 625 in African Americans, but Tay-Sachs disease has prevalence in American Jews of 1 in 3000. How can you be affected or be a carrier by these gene disorders?” (3) It all depends upon your genome inheritance. There are many genetic websites to select from with these types of disease inheritance.

“Hemophilia is an X – linked recessive disorder and has a prevalence of 1 in 10,000. These types of disorders are caused by mutation in genes of the X chromosome. Males and females are both affected in these disorders with typically a male being more severely affected than a female. But the chance of passing on this type of disorder differs between male and female. Some are affected in utero, and some shortly after birth. Examples of this type are color blindness and muscular dystrophy and the chance of passing on this type of disorder differs between male and female.” (4)

“Just as X-linked disorders occur, Y-linked disorders also occur and are caused by mutations on the Y chromosome. Only males inherit this chromosome from their fathers, therefore, every son of an affected father will be affected. Male infertility is the common example. Maternal inheritance disease applies to the gene in the DNA Mitochondrial and only females can pass these types of conditions on to their children. An example is Leber’s Hereditary Optic Neuropathy.” (3)

“The study of genetic diseases is a scientific discipline whose theoretical underpinning is based on population, genetics and molecular genetics. When you apply genetics to traditional genealogy, you have genetic genealogy. This involves the use of genealogical DNA testing to determine the level of genetic relationship between individuals.”(5)

Genetic genealogy will become a by-word with the coming health care reform measures. You are what your parents have given you, their genes. At this time, you cannot change your genetics, but you can be aware early on to monitor yourself and your situation.

In the March 2010 Discover Magazine, Dr. George Church at Harvard University was interviewed. He heads the Personal Genome Project. His group “plans to sequence the genomes of 100,000 volunteers for free that will provide the first extensive genome database that matches DNA to a wide range of traits- not merely physical attributes like hair or eye color or height but also disease histories and personalities.”(6) Dr. Church has had other far-reaching thoughts related to assembling a large data base of personal genomes and genes that were correlated with people’s traits. Dr. Church believes “these genetic quirks will help people make smarter life choices.” (6) What is interesting to me about Dr. Church’s work is how traits will be assessed of the participants. The Human Genome Project was a huge undertaking in which government and private researchers mapped the entire sequence of human DNA (known as the human genome). The project took more than 10 years and was completed in 2003. Scientists now estimate that the 3 billion or so "letters" that make up the human genome contain about 25,000 genes. The next step is to identify these genes and learn what each one does. This basic genome map will allow researchers to identify cancer-related genes more quickly. Fortunately, I am involved in this project as a participant and I am eagerly awaiting my call to have a full DNA sequencing with tissue samples and any other test they would need. As a participant I must allow full disclosure of any of my health information for the public good. This is also a part of Health Trust from Microsoft. This is my personal donation to the human race with the writing of this book. (6)

I have felt that each family needs a family health historian, and have focused my attention with presentations on this topic in the SE USA areas with genealogical and historical societies. After the breaking news about telomeres and the international awards to Elizabeth Blackburn in 2004, I began one presentation holding a pair of old Levi’s, a long shoe string and a deck of cards. I explained to my audience that in the future when they put on their jeans, to think about the importance of what they are carrying inside those pants: their genes. Several studies of telomeres with athletes show there is direct evidence of an anti-aging effect from physical exercise. The shoe string represented physical exercise which could prevent the aging of the cardiovascular system, reflecting this molecular principle.

Essentially, the longer telomere of athletes is an efficient telomere. The body’s cells are constantly growing and dividing and eventually dying off, a process controlled by the chromosomes within each cell. These chromosomal "end caps" -- which have been likened to the tips of shoelaces, preventing them from fraying -- become shorter with each cell division, and when they’re gone, the cell dies, leading to an early death. The deck of cards represented how our chromosomes after conception from our parents fall and our children become like a house of falling cards.

An even larger undertaking, The Cancer Genome Atlas (TCGA), has now begun. Researchers are proposing to map the genomes of many people with the same types of cancer to try to learn which of their genes are different from those in people without these cancers. Not all researchers agree this project is worthwhile because of the huge time and expense involved. The National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) have evaluated a smaller version of the project. The purpose of this pilot project was to find out if there was value in collecting information on the genetic basis of cancer.

The TCGA pilot project was a success, and in September 2009 the NIH announced that it is investing $275 million in TCGA over the next 2 years. The goal of their planned 5-year program is to chart the gene changes involved in more than 20 types of cancer. These projects will further our understanding of the genetic basis of cancer and other diseases, making genetic testing more useful in the future.

There are others diseases akin to these but the focus now will be on this person who states she is blessed to have lived through some of her misfortunes with cancer disease and her treatment to overcome her disease process.

L. relates her story to me:

I had a mammogram in 1999 but was told all was fine. But, when checking my left breast, inside and close to her breast bone she found a lump. This was removed and finding it was cancerous, she endured chemo and radiation but does not remember the type of cancer. During her recovery she had many personal moments asking “why me, I am not a bad person.” She went through the angry feelings of the world is against her but came out of it, only to find she found another lump at the same place on her other breast. After this was removed, she and her surgeon were very happy as it was a negative biopsy. These were her first two ‘blessed’ feelings in her world.

In 2004, she was placed on Zocor for cholesterol problems and rather than feeling in better health became nearly disabled due to leg weakness. Her physicians began to try to find the cause of this weakness ordering an MRI, x-rays and blood work. They did not find anything except a surprise brain tumor, a Meningeoma. After a special type of radiation for daily treatment for weeks and weeks, she counts herself as finding her third ‘blessed’ event in her life. Just imagine, looking for muscular leg problems and found a brain tumor. After recovery from that scary episode, she still had leg weakness. During many of these recovery periods she was given steroid therapy for the pain and inflammation created by surgeries and radiation.

According to Dr. Amar Klar, who is head of the Gene Regulation and Chromosome Biology Laboratory at the Center for Cancer Research at Frederick, Maryland, states there are “only 5% of breast cancer cases due to mutations in known genes, such as BRCA1, BRCA2, and other DNA repair genes and they run in families, and are explained by Mendellian genetics. However, 95% of cases don’t run in families, they are called sporadic cases, with unknown causes. Thus far no gene mutations have been definitely identified to explain this vast majority of cases. True, carcinogen exposure can cause breast and other cancers in experimental animals, but do carcinogens, generally assumed to be involved, necessarily the culprit in women breast cancer too? Or, is there another reason for breast disease, and for complex traits of psychoses, and even for nonpathological homosexuality preference. He hypothesizes that these traits likely result from genetics that makes us naturally develop left/ambidextrous-hand preference, the so-called NRH genotype but further research is needed to scrutinize his hypothesis. (7)

On May 12, 2009, CNN Health announced that “Myriad Genetics, a Utah-based company, vowed Wednesday to “vigorously defend” itself against a legal challenge to its patents on two human genes linked to breast and ovarian cancers, its attorney told CNN.” The follow up to this story was on CNBC’s 60 minute show, giving credence to what is in store for the business end of making money from gene research and then treatment. “The American Civil Liberties Union is suing Myriad, arguing that patenting pure genes is unconstitutional and hinders research for a cancer cure” according the CNN Health website. The cost for this test to patients is $3200.00 according to the CNN website.

As you can see at this time, genetic testing can cost a bunch of money, and it can take several weeks to get the results. As better technologies are developed, tests will become more accurate and will be able to look at more than one gene at a time. DNA chip technology is one exciting area of genetic research. These chips are able to pick out gene fragments for specific diseases. The DNA chip is now being marketed as a way to detect this specific genetic mutation, which is often linked to cancer. Laboratory researchers are now able to put DNA from cells in a DNA chip scanner and analyze which genes are active. In the future, this type of DNA testing may help doctors learn a person’s risk of developing different diseases. This could make it easier to customize treatment for that person according to the NCI.

From your DNA sequencing, when you plan your children, you will know exactly what diseases or traits may transfer to your children as progress is made with modern healthcare. Heart disease, depression, eczema, high cholesterol, cancer, Alzheimer’s Disease, obesity, emphysema, osteoporosis, high blood pressure, kidney disease, acne, scoliosis, mental retardation, nervous tics, Parkinson’s and even arthritis are hereditary and have environmental influences and genetic contributions. In the years to come, genes and genetics will become an issue at the doctor’s office.

Some gene mutations can be inherited from parents and cause a person to have a greater risk of developing certain cancers. Unlike acquired gene mutations that only affect the abnormal cells of the tumor, inherited mutations affect all cells of a person’s body. These inherited mutations can often be identified by genetic testing of blood samples. Genetic counseling and testing may be recommended for some people with a strong family history of cancer which is a major problem due to medical costs, loss of work time and adverse effects of cancer treatment.

Gene mutations can be major (like cancer) or minor. Minor problems such as nervous tics I have noticed not only in myself but in my family. I have left eye twitching in stressful situations. I remember other family members who had constant throat clearing which some claimed as an allergy: Allergies are not nerve disorders. But as I have followed the family members with the same vocal tics and hand tremors and here is what WebMD has to say about tic disorders and twitches. “Many people at some point experience spasm-like movements of particular muscles. These movements, known as tics and twitches, often affect the eyelids or face. They can, though, occur anywhere in the body. In most instances, tics and twitches are harmless and temporary. In some cases, though, they may be caused by a tic disorder. Tic disorders generally can be managed with treatment and lifestyle changes.” (8) In my experience I have noted the body parts of the face, shoulders, hands or legs are mainly affected, but throat clearing is called a vocal tic. When they are in children, they will affect a child’s life. Even though these are problem genes, behavioral changes are in order and can be successful.

Multigenerational records are being studied by research organizations that will assist finding the bad genes that can travel with a family. Huntington’s disease is one that falls into this category as the families have been traced back to Venezuela by these genetic counselors and researchers. This week in the journal Nature, “Scientists say they have found a big reason why treatment for chronic hepatitis C infection works better for white patients than for blacks. It is a tiny variation in a gene.” (9) These scientists indicate that success in treatment response is due to “that variant is more common in people with European ancestry than blacks” (Aug. 2009). (9)

Stephen Barrett, M.D. states there is ‘The Shady Side of Embryonic Stem Cell Therapy.” “Stem cell therapy is certainly a promising area for research. Stem cells have the ability to give rise to many specialized cells in an organism. Certain types of stem cells are already used to restore blood-forming and immune system function after high-dose chemotherapy for some types of cancer, and several other restorative uses have been demonstrated. The broadest potential application is in the generation of cells and tissues that could be used to repair or replace damaged organs” found at www.quackwatch.com. The most important result of “adult stem cell therapy (is that it) rebuilds the body once damaged by disease” from www.regenocyte.com. Through the years stem cell research has been a topic of intense debate between the government and scientists. The on-again off-again saga was switched off in August 2010 by a federal judge who blocked the U. S. government funding of stem cell research. Abcam in the USA has complimented their existing range of over 12,000 stem cell products with brand new stem cell marker panels. (10)

To show another side of our U.S. government’s support of family disease care is one that is important to share with you. One of my former patients has Duchenne’s muscular dystrophy and was under my care. She was confined to her bed and required all assistance with the help of a mechanical lift and placed in a wheelchair for outside visits to the doctor. She is also under the care of our National Institute of Health, finding her relatives (brothers and sisters), involved in a research study to help her relatives down the line to help with the disease progression and management within their family. I will include here information about the Family Health Portrait, so you can see how diseases can “run in your family.” Just type in the search screen on your computer, Family Health Portrait, and you will be using some of your tax dollars as this is a program from our Surgeon General of the United States of America.

If you are not into computers, this may well be your chance to help yourself and your family and friends with their medical problems because you must overcome the fear associated with personal computers, iPads, iBooks, iPhones, Droids, GPS, Nook, Kindle, Sony Reader, game controllers, as this is the age of the internet. From hand held devices, laptops and my favorite personal computer with a screen as big as a TV monitor, I can vouch for my staying in touch with the electronics world after a two-hour visit with Jeff, a technician in the network of the local computer gurus.

With learning to use the internet and once you overcome the fear of learning anything new in electronics , you can be on your way to follow the right road to managing your own care of your health. Can you be responsible for everything that has happened to you in your life? No, you can’t because of genetics. You are what your parents and other ancestors gave to you. But you can take responsibility for the things you can control, i.e. weight, nutrition, exercise regimen because there are new findings in the management of our environment and lifestyles known as epigenetics. According to the Insights of the Decade, from Science Vol. 330, in 2010, “increasing recognition of the widespread role of chemical alterations called epigenetic factors can influence the genome across generations without changing the DNA sequence itself.” But if you do not follow the daily notices on the internet, you will fall behind these important improvements in modern healthcare. The computer has become an indispensable machine and certainly no field of study has benefited more than genomics.

The Genome War: how Craig Venter tried to capture the code of life to save the world was a best seller by James Shreeve. Ventner was the director of The Institute for Genomic Research and “announced within three years he would unravel the complete computerized genetic code of human life, which was seven years before the U.S. government’s Human Genome Project. By decoding the genome ahead of schedule, he would speed up the pace of biomedical research and save the lives of thousands of people.” Ventner has made billions of dollars from his computer design of the entire human mapping of DNA since 2004. Ventner did not stop there. In May 2010, the Ventner group made The Year in News from the December issue of Science magazine as they incorporated a synthetic genome into a microbe. The ability to change the gene’s network will help scientists track down mutations that cause diseases according to genomics researchers. At the present time, the cost for a full DNA genome sequencing is $5000.00 from the information provided by the Personal Genome Project.

From an article in the magazine Science, Vol. 330, Insights of the Decade, “sequencing is getting so cheap that researchers are using it to study gene expression” and are “now tracking down the genetic causes of rare diseases.” Computerized sequencing has “spawned a new field called network science.”

So why is it so important for you to discover your family’s heritage? We are only as good as our gene repair cell processes work. At some point you may need to know how to communicate with health care workers in genetic testing and begin formulating that passage. For the time being, my thoughts go to make sure there was a purpose for this sharing of information. Some of this will be very personal in nature but it is what I have signed on for with the Personal Genome Project. Every family needs a historian or one that knows where the family records are and is keeping them up to date.

There are many choices we must make in life: medical and family are ultimately important down this road. Many of the women in the 1700s and 1800s had too many children as there were no alternatives to prevent conception. Their lives were shortened by endless child bearing (12-15 children), wearing their bodies down, and making them more susceptible to disease. Do not wait until end of life for your family as you face death. There are many life-saving measures that can be taken but if you have the experience of being in intensive care units where the real decisions must be made, you will find surgery choices, pulling breathing tubes, nutrition via a gastric tube or when to call hospice. Make your choices known to your family ahead of time, in writing, please.

With the health and disease aspects of modern medicine and where you need to be going in the information technology or computer world, the topics of DNA, Malpractice, help for Medicare and the diseases that you and I bump into: allergies, hypersensitivity to drugs, cancer, hypertension, adverse events with drugs and hospital admissions, and stories from survivors of terrible illnesses or accidents, genetic variations of disease, and even liver transplants. But there is hope for these reactions to your body and I am giving you knowledge of how to paint your family portrait to avoid some of these adversities with sound advice from an experienced Nurse Case Manager. What I hope you will learn is to know what happened to your family members and how to avoid some of the things in history that occurred. Knowledge is power.

What are the benefits to supplementing the historical and medical record with genetic data? If you have a positive match with another individual, you can identify the proper location for further research, determine ancestral homeland, validate existing research, prove or disprove theories regarding your ancestry, and discover living relatives.

In less than a decade, the biggest use of genomics as I visualize, is likely to be in drugs discovery. Cancer is at last beginning to reveal its secrets, thanks to the new technology called Biomarkers. Researchers are now trying to find out to what extent the efficacy and safety of many new drugs is influenced by genetic factors. This information is from The Economist April 18^th, 2009, as “Medicine goes Digital.” This is what I am hoping will be of benefit with my participation in the Personal Genome Project at Harvard.

Even though Stephen A. Williams wrote that Regulating Genetic Tests: Account for Benefits in Science in December 2010, there is a flaw in the FDA policy of giving accelerated approval for life-saving drugs but takes the opposite view for diagnostic tests, such a genetic testing. You must understand that when consumers find out their biomarkers for disease, the tests only provide information about DNA sequence variations. I agree with the policy there is no reason to require government approval before allowing a person to see his or her own genetic information as Andrius Baskys writes in his column in the same Science magazine.

Some of my readers will question the benefits and draw back from the cost, the testing quality, privacy issues and ethnic identity but if you can find a research study, you may have the costs picked up by that company. Costs have gone down in the past two years. Testing is better, too. Measure your benefits and drawbacks and then make a decision on what is best for you and your family. In a later part of this book, more will be discussed about biomarkers, mutations, and gene testing in America.