The Amazing Adriana

My friend from college, Adriana, was diagnosed with Type 1 Diabetes when she was 27 years old. . Some people would let this define their life, but not Adriana. Four years after her diagnosis she is living in China as a teacher and mentor to young students. She now has one more mark to add to her impressive resume, author. She was recently published in an American Diabetes Magazine Forecast.

Not surprisingly Adriana has already been contacted by young teens who want to travel and have read her essay and been inspired to pursue big goals while making management of their disease a priority.  I am so proud of Adrianna and encourage you to read her article.

Adriana’s Essay can be found here http://forecast.diabetes.org/reflections-jun2012

Tags: Adriana, China, Diabetes Forecast, Diabetes mellitus type 1

Matching For Money

On May 4^th I wrote about bone marrow transplants (BMT) and the matching process.  Every year, thousands of people of all ages are diagnosed with blood cancers like leukemia. Many patients will die unless they get a bone marrow or cord blood transplant from a matching donor. Seventy percent of people who need a transplant do not have a donor in their family and depend on a stranger to save their life.[i]

Anyone who meets basic requirements can join a national registry and volunteer to donate their bone marrow to those in need. Those who donate their bone marrow are not financially compensated. Well at least they weren’t… until now.

In December, a three judge panel of the 9th U.S. Circuit Court of Appeals in California ruled that people who donate bone marrow through a new technology can be paid for doing so, overturning a law that makes it a felony punishable by prison sentence to pay donors for bone marrow and organs. There are multiple plaintiffs in the case including parents of children with diseases that can be deadly without bone marrow transplants and a doctor who is a bone marrow transplant expert said at least one in five of his patients die because no matching bone marrow donor can be found. [ii]

MoreMarrowDonors.org,  a nonprofit group in California, is an organization who would like to take advantage of this new ruling. Their website states the goal of the organization is to “to increase the number of bone marrow donors, especially among those with rare marrow types, offering donors small scholarships, housing allowances, or gifts to charity. After a person registers with MoreMarrowDonors.org and proves that he or she has given bone marrow, we would give that person a small scholarship, housing allowance, or make a gift to another charity in their honor.”[iii]

I am in support of anything that will motivate more people to join the registry. However, I am concerned that in time, getting a bone marrow transplant is going to be only available for those who are wealthy. Take for example men and women who need assistance conceiving a child. Those who are having trouble can turn to clinics to purchase eggs or sperm. This however is a very costly process and only some can afford it.  In a decade will the only way to receive a BMT is to work with an agency and a pay a large sum of money?

This will definitely be an interesting case that I believe has the potential to change the course for many people. I just hope it is for the positive. I will keep you posted as I read more.

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[i] http://marrow.org/About/Who_We_Are/Who_We_Are.aspx

[ii] http://www.medpagetoday.com/PublicHealthPolicy/Ethics/29990

[iii] http://moremarrowdonors.org/?page_id=75

Tags: 9th U.S. Circuit Court of Appeals, Bone marrow, Cord blood, Donation, Health, MoreMarrowDonors.org

Thin Mints

USA Today had a very interesting piece on their front page. They broke down Girl Scout Cookie sales for 2011. The winner?

Thin Mints! Let’s be honest though, I would gladly eat any of them.

Tags: Cookie, Girl Scout, Girl Scout cookie, thin mints, USA Today

Transplantversary

Today is the 29^th anniversary of my bone marrow transplant. My mom calls it my real birthday and in a way it is. It’s the day I got my life back. I was lucky, beyond lucky. I have a mom who wouldn’t give up on saving my life and found a hospital who accepted me into their transplant program. I was equally lucky to have a sister who was a match and therefore could donate her bone marrow to me.

Unfortunately not everyone is as fortunate as I am. Every year, thousands of people of all ages are diagnosed with blood cancers like leukemia. Many of them will die unless they get a bone marrow or cord blood transplant from a matching donor. Seventy percent of people who need a transplant do not have a donor in their family and depend on a stranger to save their life. [i]

It is a good thing then that the National Marrow Transplant Program exists. The National Marrow Donor Program® (NMDP) is a nonprofit organization that provides bone marrow and umbilical cord blood transplants to patients in need. NMDP operates the Be The Match Registry®, the world’s largest listing of potential marrow donors and donated cord blood units.

So I know what you are thinking, how can I join the registry? I am happy to report it is VERY easy, just three steps.

1)      Confirm you meet basic registry guidelines.

2)      Complete the online form and order your registration kit. When you join, please also consider making a financial contribution.

3)      Follow the instructions in your kit to collect a swab of cheek cells and return the kit.

The registry especially needs people between the ages of 18 and 44 because younger donors produce more and higher-quality cells than older donors.  Click here for more information http://marrow.org/Join/Join_Now/Join_Now.aspx

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[i] http://marrow.org/About/Who_We_Are/Who_We_Are.aspx

Tags: BMT, Bone marrow, Donation, Health, Hematopoietic stem cell transplantation, Medicine, National Marrow Donor Program, NMDP, transplant

The Amazing Suleika and In-betweenners

The New York Times has recently started publishing a new column in their Wellness section. The column is titled “Life Interrupted” and is written by an extraordinarily brave woman, Suleika Jaoaud. Suleika is facing Cancer in her 20’s and documents her journey.  Her writing is powerful and raw.  You can read her first article “Life, Interrupted; Facing Cancer in your 20’s” here http://well.blogs.nytimes.com/2012/03/29/life-interrupted-facing-cancer-in-your-20s/?ref=health

 Something that Suleika wrote in her article really stuck with me. “Cancer magnifies the in-betweenness of young adulthood: You’re not a child anymore, yet you’re not fully ready to live in the adult world, either. After my diagnosis, I moved back into my childhood bedroom. And as I get sicker, I increasingly rely on my parents to take care of me. But at the same time, I’ve had no choice but to grow up fast. Daunting questions that most of my peers won’t have to consider for many more years have become my urgent, everyday concerns: How will I hold onto health insurance if I’m unable to work? Will I be able to have children? How long will I live?”

 I think many of us can identify with being an “in-betweenner”.  For 22 years I was luckily naïve. I went to school, I did my homework and hung out with friends. One of my biggest worries was how was I possibly going to wake up for my 9:00 am class. Then I turned 22 and became a college graduate and had to become an adult. As excited as I was to get my first job and business cards (not joking) I didn’t feel totally prepared to become a “real adult”. I think this is pretty normal.  All of this is heightened when you’re in a crisis.

 In the past few years I have had more than one serious surgery. Like Suleika, I temporarily moved back into my Mom’s house and she became my caretaker. At the same time I was over 18 so I was also in charge of making the ultimate decisions about my care. I was now responsible for signing consent forms, making health care decisions and ultimately deciding my fate.

 I have heard a similar sentiment from many friends who have had to go through difficult situations. Parents and loved ones no longer talk behind closed doors shielding us from unpleasantries. Instead we hear and see everything, sometimes even being pushed into the middle. Even when we catch a common cold it is normal to regress and want nothing more than our mom’s TLC and chicken soup. The challenge of growing up is learning to do stuff on our own but also being honest with ourselves and knowing when to ask for help.

 Which brings me back to Suleika. I HIGHLY suggest you read her new column. It has been a great lesson for this in-betweenner on becoming an adult with honesty, humility, poise and grace.

Tags: Cancer, Conditions and Diseases, Health, Hematopoietic stem cell transplantation, New York Times, Suleika, Suleika Jaoaud, TLC, wellness, Young adult (psychology)

Graphic Campaigning

On March 19^th the Centers for Disease Control and Prevention (CDC) began running a new series of anti-smoking ads. The campaign is called Tips From Former Smokers and features former smokers who are now experiencing smoking-related diseases. Besides just showcasing the challenges that these people are now going through, the stars of the campaign also give advice or “tips” to help people quit smoking. [i]

I was surprised to read that this is the first time the CDC has run a paid, comprehensive national anti-tobacco advertising effort. This is especially shocking because marketing and promotion of cigarettes in the United Sates exceed $1 million an hour—more than $27 million a day.[ii]

You can see the videos at: http://www.cdc.gov/tobacco/campaign/tips/resources/videos/.

Terrie

One of the most graphic ads is called “Terrie’s ad”. We watch as a woman named Terrie who has lost her hair and teeth to throat cancer which developed due to smoking, get ready in the morning. Terrie had to undergo a laryngectomy and speaks through a stoma.  Seeing such a young woman so sick is shocking and sad but that is the point. These ads stay with you and hopefully will stay in the minds of those who are thinking of beginning to smoke or those who want to quit.

I was not surprised to read that these ads seem to be having an impact. On April 2, The CDC released a press release which stated, “Two weeks after The Centers for Disease Control and Prevention launched the ‘Tips from Former Smokers Campaign’, calls to the 1-800-QUIT-NOW quitline have more than doubled. Previous experience from state and local media campaigns promoting quitlines shows at least five to six smokers try to quit on their own for every one person who calls a quitline.[iii]

It will be interesting to see if this campaign can maintain its impact. Perhaps it can be used to help combat other life threatening habits such as drugs or wearing jean on jean.

 

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[i] http://www.cancer.org/Cancer/news/News/new-cdc-ads-show-harsh-consequences-of-smoking

[ii] http://www.cdc.gov/tobacco/campaign/tips/resources/about/campaign-overview.html

[iii] http://www.cdc.gov/media/releases/2012/p0402_quitline.html

Tags: CDC, Center for Disease Control, Centers for Disease Control and Prevention, Health, quit smoking, quitline, quitline, Smoking cessation, Tobacco, Tobacco control movement, United States

The Peeps Are Back In Town

It’s backkkkkkk.  The Annual Washington Post Peeps Diorama Contest.  Is there anything greater than pop culture and sugar?  I think not.  Below are the highlights from this year’s submissions.

OccuPeep D.C. (Shot 1)

 OccuPeep D.C. (Shot 2)

Peepius Maximus

Just Peep’d (Shot 1)

Just Peep’d (Shot 2)

The Beach Peeps

Marine Corps Marathon: The Peep-les Marathon

Le Tour de Peeps

Welcome Home Peeps

Mount Peepmore

Peepton Abbey

To see all of the other finalists, CLICK BELOW

http://www.washingtonpost.com/lifestyle/magazine/peeps-show-vi/2012/03/27/gIQAswMmfS_gallery.html#photo=1

Tags: Confectionery, Easter, Food, peep, Washington Post

Happy Birthday

Last week my favorite cookie, the Oreo, celebrated a milestone birthday – turning 100. The very first batch of Oreos was made at the original Nabisco bakery in New York in 1912. I believe an appropriate celebration would be to consume 100 Oreos, unfortunately this would have an adverse effect on my waist line. Instead, I have researched some of the most original Oreo creations.

1. Oreo Pancakes
2. Oreo cocktail ring
3. Oreo Milkshakes
4. Oreo Biscotti
5. Oreo Cookie Martini
6. Oreo Lattice Pie Cookies
7. Oreo Muffins
8. Oreo Cameos
9. Oreo Donuts

And for the finale….

10. Ultimate Chocolate Chip Cookie n’ Oreo Fudge Brownie Bar

References: http://blog.springpadit.com/2010/03/fifteen-creative-ways-to-use-oreos/ http://picky-palate.com/2011/07/13/oreo-and-peanut-butter-layered-baby-lattice-pies/ www.kraftrecipes.com/recipes/ http://www.runningwithspatulas.com/2012/02/oreo-cheesecake-cookies.html http://www.diyinspired.com/dessert-martinis/ http://www.kevinandamanda.com/whatsnew/new-recipes/ultimate-chocolate-chip-cookie-n-oreo-fudge-brownie-bar.html#ixzz1p7CbgdEP http://jgklausner.com/work/oreo-cameo#p25 http://shop.confectionjewels.com/product/oreo-cookie-time-cocktail-ring http://pinterest.com/pin/130604457913435349/

Tags: Baking and Confections, Cookie, Cooking, dessert, Drink, Food, Kraft, milkshake, Nabisco, Oreo

Be Aware

This year National Patient Safety Awareness week is being celebrated from March 4 through March 10. I know how you feel! This topic is so exciting I can’t sleep at night either. But seriously, patient safety is important. Since patient safety was first brought to light in the 1990s, studies have shown a staggering number of patients harmed by preventable medical errors. Medical errors can cause serious injury or death and result in billions of dollars in excess health care costs nationwide each year. The World Health Organization (WHO) estimates that 1 out of every 10 patients worldwide is impacted by these errors. [i]

With the help of the guidelines set by The National Patient Safety Foundation, (NPSF) I have developed the list below on what you can do to make sure you and your loved ones have a safer healthcare experience.

 Keep track of your history

 

Write down your medical history including any medical conditions you have: illnesses, immunizations, allergies, hospitalizations, all medications and dietary supplements you’re taking, and any reactions or sensitivities you’ve experienced. My husband and I do this in the notes section of our cell phones. In addition, my husband and a few close family members have my history in case I am not able to convey the information myself to a medical professional.

Pay attention 

If something doesn’t seem right, call it to the attention of your doctor or health care professional because you know what? It might not be right. For example, I was once getting a CT Scan that I was told numerous times would be done without an IV because contrast wasn’t necessary. When I checked into my appointment I was told I needed to get an IV for the contrast. I knew I had been told differently and when I spoke up about it, it turned out they were looking at the wrong order.

Take medications exactly as prescribed

Your doctor is prescribing you medication at a certain dosage for a reason. I have many friends who will tell me that they have stopped taking medication because they feel better. Feeling better and having a bug out of your system are two completely different things. For example, a person who does not finish their antibiotics increases the chances that they may get sick again soon after, even though he or she has begun to feel better.  The antibiotics kill the bacteria that are causing the illness.  However, if you stop taking the medication ahead of time, it is possible that the same bacteria will begin to grow once you stop and cause you to get sick again. Who wants that?[ii]

Last but definitely not least remember It is OK to Ask!

It is ok to ask your doctor about ANYTHING you don’t understand. This can be as simple as where you should report for your next treatment or as complicated as explaining surgery options. It is your right as a patient to fully understand the care and treatment you’ll be receiving. Furthermore, The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) reports research that shows patients who take part in decisions about their health care are more likely to have better outcomes.[iii]

For more information about Patient Safety, check out the National Patient Safety Foundation’s website at http://www.npsf.org/for-patients-consumers/patients-and-consumers-key-facts-about-patient-safety/

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[i] http://www.hmsa.com/about/transparency/patientsafety/default.aspx

[ii] http://www.gethealthyharlem.org/articles/antibiotic-medication-be-sure-finish-all-it

[iii] http://www.jointcommission.org/facts_about_speak_up_initiatives/

Tags: Health care, JCAHO, Joint Commission, Medical error, National Patient Safety Foundation, NPSF, Patient safety, Patient Safety Week, The Joint Commission, World Health Organization, World Health Organzation (WHO)

I Have Bieber Fever

Social Media can be very dangerous.  I have heard more than one story about Facebook being used by kids to bully each other. I am constantly reading warnings on Craigslist reminding me to be careful of whom I meet and interact with. However, social media is not always a bad thing. Facebook is great as it helps me to remember friend’s birthdays. I love using Twitter as a way to stay up to date on the latest in healthcare and all things Kardashian. Recently a friend told me about a story where social media actually made a dream come true.

Avalanna Routh is a 6 year old from Methuen, Massachusetts who was diagnosed at 8 months old with a rare form of brain cancer, Atypical Teratoid Rhabdoid Tumor, or AT/RT. Often after a grueling day of treatment at Boston’s Dana-Farber Jimmy Fund Clinic, Avalanna will go to a local spa for some much needed rest and relaxation. It is here that she spoke about her dream to meet international pop super star Justin Bieber. When employees of the spa found out how badly she wanted to meet Bieber, they started a media campaign to make her wish a reality. They tweeted, facebooked and contacted every newspaper, radio and television station to get the attention of someone from Bieber’s camp. As it happens, a staff member from the local Fox network reached out to a friend that had connections to Justin Bieber’s manager

After hearing Avalanna’s story, Bieber flew Avalanna and her family to NYC so they could meet. They spent 2 hours playing Candyland, laughing and taking pictures. What is more, friends and family hope this brings attention and funding to AT/RT. Since this disease affects such a small population drug companies have little incentive to spend money developing much needed treatment that could one day lead to a cure.

(Photo Tweeted by Justin)

I have to admit I was not a huge fan of Justin Bieber but now I have Bieber Fever.

After their time together, Bieber tweeted that meeting Avalanna was “one of the best things I have ever done” and referred to her as “Mrs. Bieber”.  He even included a picture of them goofing around in his tweet.  Beyond the obvious, what has really impressed me about this story is that Bieber could have easily phoned Avalanna or sent her an autograph.  Some celebrities might have ignored the request all together but instead Bieber flew from LA to NYC for a two hour play date with her.

 The power of social media is really amazing as this whole thing happened within 5 days. It certainly makes it harder to say “that’s impossible” as it really seems that with a little help from Twitter, Facebook and friends, dreams really do come true. Congratulations Mrs. Bieber.

Tags: AT/RT, Atypical Teratoid Rhabdoid Tumor, Avalanna, Avalanna Routh, Bieber, Bieber Fever, Boston, Facebook, Jimmy Fund, Justin Bieber, Methuen, Routh, Twitter