This blog post really struck a cord with me. I have worked with children and adults with varying cognitive and developmental deficits, and I could not agree with this woman more. So many people use the word “retarded” casually, with disdain and disgust. I know the word is technically still part of the DSM, but I have made a conscious effort to remove the word from my vocabulary altogether. I think it is important for people to help end the use of the “R” word—if you hear it and laugh or just don’t say anything, you’re saying to that person “I’m okay with you mocking individuals who were born different”.
A review of The Immortal Life of Henrietta Lacks, by Rebecca Skloot
Over the past 4-5 days, I have been reading the New York Times Bestseller, The Immortal Life of Henrietta Lacks. I was apprehensive to read this book initially, thinking it was merely a story about an individual who donated her body to science (admirable, but not necessarily unique).
Human anatomy and physiology have always interested me, but I have never taken the time to read about HeLa any further than my high school textbooks allowed. It seems as if until now, I have kept science and American history separate. Thanks to author Rebecca Skloot, I learned that these things could not be more related when it comes to the story of Henrietta Lacks.
The book begins with the life of Henrietta Lacks, mother to five children and wife to husband, and cousin Daniel Lacks. Ms. Lacks was diagnosed and treated at the renowned Johns Hopkins Hospital in Baltimore, Maryland. At the time, Johns Hopkins was one of the few hospitals who would treat African Americans.
The book goes on to discuss how Dr. George Gey and his lab assistant grew immortal “HeLa” cells, named after Henrietta Lacks, where the original cancer cells originated. Skloot outlines the history of the HeLa cells including historic discoveries in medicine and science.
The Polio and HPV vaccines (among other HeLa contributions) were known, however, by the scientists and researchers worldwide who owned their own batches of HeLa. What was not known worldwide, nationwide, or even statewide, was the story of Henrietta Lacks’ family.
It took Skloot 10 years to uncover the mysteries of Henrietta Lacks—from Johns Hopkins, sure, but more-so from her daughter, Deborah Lacks.
It is Skloot’s loyalty to Deborah Lacks and her relatives that makes the biggest impression. Skloot earns the trust and respect of the Lacks family through persistence, patience and genuine curiosity.
If you google “Henrietta Lacks”, search results will include the Henrietta Lacks Foundation, which was founded by Skloot and funded by this novel.
I am humbled and awestruck by the work of Rebecca Skloot. Not only does she display inarguable talent as an investigative journalist, she defies the notion that writers must pry and deceive to create a valuable piece.
Kudos to you, Rebecca Skloot, may you be an example for your peers and patrons alike.
December 10, 2011 was the Gertrude A. Barber National Institute Christmas Ball.
“Barber National Institute offers a complete range of services that includes early intervention for infants and toddlers, an inclusive preschool, an Autism Center of Excellence, an approved private school, job training and placement, residential options including community group homes, Lifesharing and supported living programs, in-home services, specialized therapies and behavioral therapy, a creative arts program and a retirement center” Retrieved from www.barberinstitute.org/aboutus
Each year, the Christmas Ball is held as the main fundraiser for BNI. This was my first year attending the ball, and I had a great time with friends, family, and of course, live music!
“ Ask for what you want and be prepared to get it ”
I intern at a children’s hospital, so it’s sometimes difficult to focus on one disease over another. Since I also intern at the Cystic Fibrosis Foundation, CF has been one disease that stays with me every day. Today I had the opportunity to interview someone in the office who happens to have two cousins (they’re brothers) who have CF.
It did not really occur to me how terrible it is to learn that your child, sibling, cousin has CF. In fact, the two men I learned about today were diagnosed when the younger brother was born and the older brother was only 3. At that point in time, the parents were told their sons had about 15 years to live.
Cystic Fibrosis affects around 30,000 people in the United States. The disease is carried by a recessive gene—when a man and woman have the CF gene, their children have a 1 in 4 chance of developing CF. Around 3% of Americans are carriers for the CF gene—they exhibit no symptoms and may not find out they are carriers until they have a child diagnosed with CF.
Cystic Fibrosis is a disease in which the body produces thick mucous that coats and clogs vital organs—especially the lungs. The mucous also makes it difficult for the digestive system to function properly as the digestive enzymes cannot work effectively—leaving many individuals with CF underweight. In order to maintain a healthy weight, people with CF have to take enzyme supplements with every meal.
So what’s the day-to-day like for someone with CF? Today, children go through hours of respiratory treatments every day and take dozens and dozens of medications (years ago the only way to lift the extra mucous from the lungs was through PT—which really consisted of beating the person with CF on the back). If individuals with CF come into contact with someone with a cold or flu, they can become critically ill. To make matters worse, there are certain bacteria that live in the lungs of people afflicted with CF and if these people come into contact with the bacteria of other people with CF, this can also cause extreme decreases in lung function.
Exercise is very important for children and adults with CF, because it helps loosen the mucous in the lungs. It is also important to cough when possible, as this is the body’s way of eliminated the extra fluid. People with CF become dehydrated more easily than typically developing individuals, and they also have a higher caloric need. That said, it is important to have high calorie, high sodium snacks and drinks after exercise to maintain proper nutritional levels.
So while the average age of survival for someone with CF is now 37—this is currently a set number. That means no matter how well someone with CF follows his/her treatments and how good he/she is as a person—he/she is going to die young.
The Cystic Fibrosis Foundation donates around 90 cents for every dollar raised to fund research, education and care. It is amazing to me how wonderful the “CF Family” is—I have learned so much from working with the people at the Cystic Fibrosis Foundation, and I am committed to fight to cure CF.
*Much of the statistical information found on the CFF website.*
Today I learned that a friend of mine passed away unexpectedly. I have not talked to him recently, and so I feel a huge sense of guilt. I feel guilty because the last time I talked to him was via text message and was several months ago. I feel bad because I never became really close friends with him—even though this is hard to do with many people. I wonder if I would regret not talking to him had this tragedy never occurred, and how often I would think of him if he lived a long, healthy life. I find it to be fate, that just last week I talked about him to friends of mine—how I had spent time with him.
It’s interesting how I deal with death in my internship, and yet the fact that I did not know the patients makes it fairly easy (for lack of a better word) to move on. Do I feel guilty because this person died, or do I feel guilty because I did not see it coming—and I never told the person how great I thought he was?
Death is never easy. It reminds the living what life is really all about, and it challenges us to be better, more. I am deeply saddened by this person’s death whether he was my best friend or a guy I just happened to know. I am sorry for the family and friends he left behind—as his passing came as a shock to them as well.
A constitutional amendment facing voters in Mississippi would declare a fertilized human egg to be a legal person, effectively branding abortion and some forms of birth control as murder.
Yesterday I went to Trax Farm! This is a picture of the honey bees—busy making yummy honey! Trax is a fantastic place to go during the month of October. There are tons of activities for the entire family, and people of all ages will enjoy it! I came home with fresh apples, banana bread and tasty kettle corn popcorn! This is a great activity to do with kids whether Halloween is celebrated or not!
Fallingwater! Such a beautiful place:)
This is “Pat” my medical play doll. I use Pat to teach pediatric patients about IV starts and other medical procedures. Real medical equipment is used in these sessions, so that children are able to recognize and understand the tools that are used to care for their bodies! Medical play is one of the many things Child Life Specialists do!