LA KELLEY

The Great Influenza

I always believe we can learn so much from history, and that’s one reason I enjoy reading about history so much, especially medical history. This is incredibly relevant now, as the pandemic dominates the news, and our lives.

A few years ago, I read a great book called “The Great Influenza,” by John M. Barry (Penguin Books, 2004). I decided to reread it, since so many people on social media are making comparisons to coronavirus and the Spanish influenza pandemic of 1918, particularly in how our government is handling it.

Tonight, I just want to set the stage for the pandemic. It’s incredible to see how far we have come medically since the early 1900s.

First, know that the Spanish flu to this day remains the worst disease in history. Nothing can compare, not HIV, not COVID-19. From just 1918 to 1920 from 21-50 million would die from it. It’s estimated that 8-10% of all young adults then living may have been killed by it.  

What I love about this book is that it’s also the story of science, and how our thinking changes in response to a medical crisis. We’re watching that in action even now, as politicians, physicians, the nightly news and even our own friends now social media battle it out for what are the right approaches to take.

First—and this is incredible–medicine was not held in high esteem in the US. Barry reports that as late as 1900 only 20% of medical schools required a high school diploma! Almost anyone could call themselves doctor. Most medical students attended lectures, took one test, and never even saw a patient until they started practicing.

Barry notes that when Union Surgeon William Hammond stopped the use of violent purgatives (to rid the patient of “bad humors” like bile), he was court martialed and condemned by American Medical Association! No institution supported any medical research, and at Harvard, one professor of surgery admitted most medical students could barely write! Harvard president Charles Eliot realized the entire medical system had to be updated and improved.

And so began a movement to improve the American medical system. To whom did we look? Europe. The best medical institutions in the world were in Germany and France.

And so on September 12.1876, Johns Hopkins University was founded to change the way medicine was researched, delivered, and taught in America. If you watch CNN, you’ll note in the right hand margin that its daily statistics on COVID-19, including number of cases and number of deaths, is from Johns Hopkins University.

Thomas Henry Huxley

During the opening celebration, keynote speaker and English scientist Thomas H. Huxley, said, “Sit down before a fact as a little child, be prepared to give up every preconceived notion. Follow humbly wherever and to whatever abysses nature leads, or you shall learn nothing.”

It’s unfortunately not what many people are doing these days: accusations of misleading the public for political gain are tossed around from the CDC to the White House to news outlets, leaving us confused and anxious. Huxley would rather we listen and learn with open minds. And we can learn from the Spanish flu pandemic. To be continued next Sunday…

The Lost Crown

Two months into the pandemic, and I have read 18 books so far this year. And… I’ve watched a ton of movies on iTunes! But I love reading. If you need to wean your teens away from the TV and video games, look into some interesting books for young readers. Here’s a historical novel, labeled juvenile fiction, about Alexis (also called Alexei, or Aleksei) the prince who had hemophilia.

The Russian Royal Family

The novel takes place in Russia, in the early 1900s. From August 1917 until the night of July 4, 1918, the four Grand Duchess daughters of Tsar Nicholas II and Empress Alexandra Feodorovna alternate documenting their lives at their castle called Tsarskoe Selo, in St. Petersburg, and then under house arrest at Tobolsk and Ekatininburg, in Siberia.

Each with a different perspective and their own distinct personality, Olga, Tatiana, Maria, and Anastasia relate daily occurrences in a diary format filled with much conversation, and some personal opinions. The four young women mention their younger brother, Tsarevich Aleksei Nikolaevich, who had hemophilia, on almost every page. They also comment frequently on their three dogs (Jemmy, Ortipo, and Joy), the staff and servants, and possible suitors. While maintaining a strong familial bond, the four Grand Duchesses, known as OTMA, also express their minor irritations of living in close proximity, and just being young adults. They were under constant watch by the guards, who were part of the Bolshevik revolution that eventually took over the largest country on earth. They thought they would eventually be released and allowed to leave Russia. But fate had another destiny for them.

Hemophilia is frequently mentioned, though not in great detail. Due to his hemophilia, Aleksei nearly died in Spala in 1912. Later in 1917, he had a swollen and knobby ankle. His illness is as “violent and temperamental as a volcano.” Aleksei had frequent pain and bruises. He moved about on his three-wheeled cycle and his wheelchair, or Nagorny, his sailor nanny, carried him. He had pain, cramps, and a hematoma on his hip in 1917. He can’t walk, so is carried or would sit in a wheelchair. In 1918 he bumped his knee, which became swollen. As Tatiana explained, “Hemophilia is not a disease that simply vanishes.” No indeed; thanks to the girls’ great-grandmother, Queen Victoria, hemophilia became known as “The Royal Disease.”

The book includes a two-page map, a four-page cast of characters, a two-page Russian Words & Phrases, one page for a note about dates, six pages of Romanov family photos, a four-page Author’s Note, and a bibliography. In the epilogue the author notes that DNA testing of Skeleton Number 6, one of a grand duchesses in the larger mass grave that was eventually found, was a carrier of type B hemophilia.

The Lost Crown was written in 2012 by the award-winning author of young adult fiction Sarah Miller, 2012. Get it for your young reader, and maybe even for yourself!

Thanks to our colleague and contributing writer Richard Atwood, from North Carolina.

Climbing for Chris!

Chris Bombardier…. have you heard of him? He’s only the first person in history with hemophilia to have summited Mt. Everest (and the entire Seven Summits) and this is the third anniversary of his historic climb. Incredibly risky, incredibly rewarding. And he is now executive director of the nonprofit I founded, Save One Life.

Chris at the summit of Mt. Everest!

Chris has dedicated his life to helping those with bleeding disorders in developing countries. He even put his life on the line, to raise money and bring awareness of the plight of those with lack of access to factor.

Now all he is asking is for us to climb! Not Mt. Everest, but your stairs, in your home. Climb your stairs 29 times, to represent Everest (29,029 feet), donate $29 to Save One Life, and challenge 9 of your friends! So we are climbing for Chris (to honor his climb) but really climbing for the kids who suffer.

So today I did it! 38 steps, 29 times. After after I did that, I did it about two more times. And I’m going to keep doing it this whole month of May. How about you? Enjoy this 2-minute video to “Holiday” by Green Day, get motivated, and climb! I don’t know about you, but being in quarantine has not helped my waistline. I’m used to being super active. This will help! Learn more at www.saveonelife.net!

Failure to Plan is a Plan to Fail

Michael Joshua

I’m so excited that the time has finally come for me to be in college, on my own, making my own decisions without direct input from my mom. However, I can still hear her advice even when she is not around. 

  1. Contact campus emergency, not 911.  The officer on duty was able to access my emergency plan.  She called an ambulance and provided me with a taxi voucher to return to campus once I was discharged from the hospital.  I left the campus via ambulance at 1:00 am.
  2. My hematologist spoke directly to hospital personnel in the emergency room and they were expecting my arrival. Unfortunately, the medical staff was not very familiar with hemophilia.  However, I remembered my mom always stressed the importance of me being knowledgeable enough about my diagnosis to be an advocate for myself. I was able to instruct the nurse on how to mix and infuse the factor.  The nurse had orders for an x-ray and to draw factor levels.  I remember a situation when I was younger that the ER staff wanted to draw factor levels and my mom refused.  I agreed to the x-ray.  I expressed to the nurse that I infused on a prophylactic schedule and checking levels immediately following that type of trauma was not necessary.  They also wanted to keep me overnight for observation.  I did not want to stay overnight at a hospital for a toe injury so I told the nurse that 24-hour observation was not necessary and I would be willing to sign anything she needed refusing their recommended treatment.  It felt so empowering to make a decision alone about my treatment.
  3. I was discharged from the ER and returned back to campus at 3:08 am.  When I called my mom couldn’t believe that I had been transported to the ER via ambulance, treated and returned back to campus in two hours.  Modified attendance is part of my academic accommodation so before I went to sleep, I emailed my instructors to inform them that I would not be in class the next week.  The office of accessibility was also contacted because my injury resulted in difficulty walking and my dorm room is located on the 9th floor.  When I woke up it was 1:30 pm.  I was contacted by the director of food service about my meals and my meals were delivered to my room.
  4. Not only did my accessibility counselor follow up with me, but my mom informed me that because she has permission to discuss my records, she was also contacted and informed of the incident.  My counselor asked if there was anything else that could be done to assist me.

Well, I had a bleed at school that required emergency treatment.  Not only was it a school holiday but it was in the middle of the night, 12:50 am to be exact.  As I was doing some strength training in my room, I injured my toe.  The entire foot was swollen in a matter of minutes, I was in extreme pain and could hardly stand.  Of course, my first reaction was to infuse but I wasn’t able to administer hardly any of the dose (my veins kept blowing).  As I sat on my bed, I decided to call my mom.  Not for her assistance but just to let her know what was going on.  She has always said that she prefers to be in peace, not pieces.  In other words, try not to make her worry any more than she already does.  After speaking to her, I called my hematologist.  We decided that going to the emergency room was necessary.  I called my mom back and informed her of the next steps.  She reminded me of the emergency plan that was put in place during orientation with the office of accessibility.  There was nothing for me to figure out.  I just followed the plan. 

Planning ahead and having a documented emergency plan in place was well worth the effort.  The plan was followed as written and most of all, the plan worked.  This incident confirms, “I have hemophilia; hemophilia does not have me”!

Michael Joshua, age 19, is from Baton Rouge, Louisiana. He attends Loyola University of New Orleans. My major is political science; he intends to become a successful lawyer.

Happy Easter!

HemaBlog takes a break three times each year: New Year’s Day, Easter and Christmas. We hope everyone is staying in, staying safe and staying hopeful during this time of the Coronavirus.

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