Laurie Kelley

The Amazing Dr. Mütter: Father of US Plastic Surgery

Laurie Kelley March 3, 2024

“But what sustains the physician, in the stillness of night, in the chamber of pestilence, in the reeking hut of the sick beggar—in the cell of the maniac? A moral courage, which bids him die rather than desert his charge—a God, who tells him that “a faithful shepherd must give his life for the flock!” Thomas Dent Mütter

Last week I took a brief trip to Philadelphia, the birthplace of modern medicine in the United States. I am fascinated by the history of medicine—perhaps because I had a son with hemophilia in 1987, although I can recall desperately wanting to be a veterinarian as a child. Nowadays, I just read everything I can about medicine through the ages. For this trip in particular, I wanted to revisit The Mütter Museum, an odd and eclectic collection of anatomical and medical anomalies, kind of a Ripley’s Believe It or Not for medical students.

But you don’t have to be a medical student to learn a lot from this astounding collection.

And while it is Bleeding Disorders Awareness Month, and we are all sharing information about bleeding disorders in the US, I think it is good for us all to appreciate the humble roots of all medicine, and especially appreciate the remarkable legacy given to us by Thomas Mütter, who was born this week, March 9 in 1811 in Richmond, Virginia. Sadly, his mother, father and younger brother died by the time he was seven. His maternal grandmother took him in, but then she died not long after. He was then raised by a wealthy friend of his father, who put him in a boarding school. Thomas, now lacking any family and suffering bouts of colic, decided to become a doctor. And what a doctor he would become.

In the 1800s, Paris was the epicenter of medical innovation, and Mütter would eventually study there, and witness poverty and suffering. Even still, life was harsh and brief then. Children were abandoned; more than sixteen thousand children were wards of the Hôpital des Enfants-Trouvés, and four thousand of those would never live to adulthood. He saw how open-minded the French were in their approach to medicine. He studied under legendary physicians, especially

Guillaume Dupuytren, of Paris’s largest hospital, the Hôtel-Dieu, the city’s, who altered the course of surgery. Dupuytren performed les opérations plastiques—plastic surgery. “Plastique” doesn’t mean plastic, but flexible. This surgery hoped to reconstruct injuries using the patient’s own body, such as tissue, skin, or bone, to heal.

At age 21, Mütter returned to Philadelphia, where there were (and still are!) two superb medical colleges—the University of Pennsylvania and Jefferson Medical College. In fact the University of Pennsylvania School of Medicine became the first and only medical school in the thirteen American colonies in fall of 1765. Surgery at this time was still crude. There was no anesthesia, and the best surgeons were usually the fastest. Mütter was ambidextrousness, and could do twice the work in half the time, it was said. Public sanitation was nonexistent, and Philly, like most big cities, was hit hard with epidemics. In 1793, yellow fever struck; in 1832, a cholera epidemic hit. Without electricity, surgeries were performed in natural light or by candlelight.

Mütter was such a notable surgeon, so talented, that he was awarded the chair of surgery at Jefferson College. He was their youngest and least-tested professor.

He appeared to be beloved by his students; his lectures were fascinating. At a time when lecturing was very one-sided—students listening and professor talking—Mütter was first US professor to introduce a more informal style of teaching, asking questions and engaging in dialogue with his students. Mütter’s reputation was also enhanced by his habit of bringing specimens to class—preserved body parts, often in jars. These would form the basis of his museum.

He had other firsts: introducing a new type of plastic surgery that is still today used, called the Mütter flap. Keeping patients overnight in recovery beds, instead of being sent home the day of surgery in horse-drawn, unsanitary carriages with wooden wheels. Suspecting that physicians introduced germs to patients during their physical exams as they did not wash in between patients—sepsis, which would not be confirmed for years later. Becoming the first surgeon in Philadelphia to administer anesthesia for surgery, even though his peers did not trust the newfangled chemical. He struggled for anesthesia to be adopted by the medical community to end unnecessary human suffering—proving himself to be a hero to patients.

And with all his accomplishments, it was perhaps his compassion and tenderness towards his patients that made him different from everyone else. From students to peers to superiors, everyone noted Mütter’s gentle manner, listening skills and time spent comforting the suffering. Perhaps because he himself had suffered so much in life.

“’Brilliant as Dr. Mütter was in his didactic teachings,’ one of his students later wrote, ‘he surpassed himself in the clinical arena.’ Mütter’s methodical nature and utter focus before, during, and after the surgery was unprecedented—as was the amount of empathy and kindness he displayed for those under his care. Furthermore, Mütter was known for putting ‘considerable emphasis’ on the care and attention he paid to patients prior to performing the operation. He would not only develop a bond with the patient via gentle, consistent communication, but would also physically as well as mentally prepare them.

“Because of this care, Mütter’s work and reputation rose above that of his contemporaries. He even treated a man who suffered horribly from elephantiasis and, immediately afterward, took up a collection for the man, reminding the students that compassion for someone like this does not stop at the operating room door.”•

His legacy is vast. For example, he inspired people like Edward Robinson Squibb, who was inspired to find a way to standardize ether, and provide doctors and surgeons with standardized chemicals for their work. His advocacy later led to the creation of the US FDA.

And then there is the Mütter Museum. Mütter had seen jars of fetuses and deformities in anatomy in Paris, labeled “MONSTER.” He brought a feeling of humanity to these unfortunates. By keeping them on display, he taught his students compassion for those who suffer. At first Jefferson College refused to create such a museum, but Mütter knew his time on earth was short, and pushed. Finally, in December of 1858, an agreement approving the Mütter Museum was, at long last, legally recognized. Dr. Thomas Dent Mütter died a mere three months later, at age 47.

Try to visit the Museum if you can; Philadelphia is a city filled with history, of our nation—and our medicine.

“This world is no place of rest. It is no place of rest, I repeat, but for effort. Steady, continuous undeviating effort. Our work should never be done, and it is the daydream of ignorance to look forward to that as a happy time, when we shall wish for nothing more, and have nothing more to accomplish.” Thomas Dent Mütter

Excerpted from Dr. Mutter’s Marvels: A True Tale of Intrigue and Innovation at the Dawn of Modern Medicine by Cristin O’Keefe Aptowicz

U.S. Presidents and Hemophilia

Laurie Kelley February 18, 2024

Monday, February 19, is President’s Day, which used to be called Washington’s Birthday, in honor of our first president. It got me thinking about whether U.S. presidents have any connection to hemophilia. For the sake of history—our hemophilia history—you should know that they do.

Thanks to the advocacy efforts of the national hemophilia community, President Ronald Regan, our 40^th president, issued on February 21, 1986, a proclamation declaring March “Hemophilia Awareness Month.” This was, of course, at the height of the national blood infection scandal—it took Regan’s actor friend Rock Hudson to come out as homosexual and share publicly that he had HIV for the Regan Administration to finally pay attention to what was happening. That is a whole story in itself (Read And the Band Played On to learn the history). It was a dark time, still remembered by many of us.

But the proclamation at least gave our community national, positive recognition.

Now, we celebrate advances made in treatment and technology. And as our community becomes more inclusive, it is called Bleeding Disorders Awareness Month. Read the original proclamation below…

February 21, 1986

By the President of the United States of America

A Proclamation

Hemophilia is a genetic disease in which the blood will not clot properly because a specific clotting factor is missing or defective. It is almost exclusively a male disease, affecting one of every four thousand live male births, regardless of race, nationality, or family economic status.

Significant advances have been made in the diagnosis and treatment of hemophilia. Methods of early diagnosis provide the means to institute preventive measures at an early age. Modern blood fractionation technology provides a moderately priced, readily available supply of the needed clotting component for those who must have regular infusions. Still, hemophiliacs face a life of unpredictable medical complications that may result in disability or death.

Proper medical treatment for the hemophiliac, and public awareness and acceptance of this medical condition, will allow the individual to live a normal, productive, and independent life and will dispel many of the common misconceptions of the disease.

To stimulate public awareness about hemophilia and to encourage the development of improved techniques of diagnosis and treatment, the Congress, by Senate Joint Resolution 150, has designated the month of March 1986 as “National Hemophilia Month” and authorized and requested the President to issue a proclamation in observance of this period.

Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the month of March 1986 as National Hemophilia Month. I invite the Governors of each State, the Commonwealth of Puerto Rico, the officials of other areas subject to the jurisdiction of the United States, and the American people to join me in reaffirming our commitment to finding better ways of helping those afflicted with hemophilia.

In Witness Whereof, I have hereunto set my hand this twenty-first day of February, in the year of our Lord nineteen hundred and eighty-six, and of the Independence of the United States of America the two hundred and tenth.

Ronald Reagan

Alternative Pain Relief

Laurie Kelley February 11, 2024

Pain is highly personal. No two people experience the same feeling of pain, even when it’s the same injury, like a muscle bleed, or experience, like childbirth. A joint bleed may feel tingling to one, stabbing to another, or throbbing to someone else. A man with hemophilia A said, “Pain is pretty deeply personal. I personally have never been able to figure out what to say when a nurse asks me to describe my pain.”

But it’s especially personal when trying to describe the level of pain. Doctors often ask patients to rate their pain on a scale of 1 to 10. But what is a 1? What is a 10? A level 8 to one person might be a level 3 to another. Ed, who has hemophilia A, notes, “The HTC [hemophilia treatment center] will understand that most of us older guys have a base pain level that stays steady at a 5 or 6 every day. We’ve gotten used to that level of pain and this is our ‘normal.’ What’s difficult is when you go to an ER and try to relay that same information.” This is critical when people with bleeding disorders try to explain their level of pain to their doctor. Not appreciating or understanding how much pain a person is feeling may lead to an inefficient treatment for that pain.

Bonnie interprets her pain at lower levels when compared to people without a bleeding disorder. “I feel like what would be painful to someone else is just the norm for me. And I don’t find it painful because I’ve learned to live with it.”

Because pain is so personal, medication may not be the first—or the only—option for chronic pain. Instead, both patient and physician can consider different types of complementary and alternative medicine (CAM) to learn how to handle chronic pain. And like pain, CAM can be highly personalized as well.

What Is CAM?

CAM is any adjunct (additional) therapy, like massage, used along with conventional medicine. It’s an important part of a multimodal or multidisciplinary approach to pain management. It’s also important in integrative medicine, which focuses on the whole person and makes use of all appropriate therapeutic approaches, healthcare professionals, and disciplines to achieve optimal health and healing. Here are some of the most common CAM therapies:

Relaxation Therapies. Relaxation teaches you to relieve tense muscles, reduce anxiety, and alter your mental state. Mindfulness meditation helps you focus attention on a specific object or your breathing patterns to induce relaxation. Guided imagery is a conscious meditation technique of relaxation followed by visualization of a soothing mental image, like walking on a beach at sunset.

Biofeedback Training. You can learn how to recognize and change your biological reactions to stress and pain by using electronic equipment to monitor your physical responses: brain activity, blood pressure, muscle tension, and heart rate.

Behavior Modification. Some people with severe chronic pain may become anxious, depressed, homebound, dependent, or bedridden. Behavior modification helps you create a step-by-step approach to confronting challenges by changing your behavior and shifting your attitude. Matt Barkdull, a man with hemophilia B who is also a licensed mental health specialist, says, “Behavior modification and stress management are my go-to interventions. I resist the urge to curse my bad luck, attack my self-identity, or become bitter (for that which we harbor is that which we attract). I believe pain is there to teach me a lesson, to remind me to appreciate better days ahead. When I meditate upon these things, I become more grateful for the important things in my life, and make better decisions. These interventions seem to work best when pain is dull but constant and for bleeds that are relatively minor but have caused some mobility problems that will require a little time to heal. Spiking and blinding pain (deep muscle bleeds from injury) often requires me to reach out and share my struggles, perhaps take a pain pill or two, and seek some relief. It’s hard to be mindful while battling the sting of acute pain. However, I find if I deliberately engage in deep-breathing exercises and stay connected while avoiding allowing my mind to wander and unhinging from false perceptions, the pain is much better controlled.”

Stress Management Training. If your pain level is high, your stress levels probably are, too. This training helps you maintain a routine schedule for activity, rest, and medication. It incorporates exercise or physical therapy into your daily routine, and trains you to keep a positive outlook.

Hypnotherapy. Therapeutic or medical hypnosis directs your focus inward to help you relax and reduce pain and anxiety. You can learn self-hypnosis from a trained hypnotherapist.

Counseling. Individual, family, or group counseling with a professional trained in pain management can provide emotional support and guidance. Tina, mother of two young children with hemophilia A, notes that anxiety is a type of pain: “Most of my boys’ pain is anxiety-related. It causes discomfort. I feel my children are more anxious than non-hemophilic kids because they associate injury with the added step of factor.” George adds, “Speaking with a mental health professional and learning meditation helped me the most. I can’t tell you how at peace I became when my mind accepted the fact that pain is part of my life and I can turn it into power and motivation to help others.”

Acupuncture. Many patients report pain relief from this ancient Chinese technique of inserting and manipulating thin needles into specific points on the body known to control pain pathways.

Dozens of other therapies, including acupressure, massage, and chiropractic manipulation, may help control pain. Transcutaneous electrical nerve stimulators (TENS) deliver electrical impulses to interfere with pain transmission. Ultrasound therapy warms joints internally to provide pain relief, and laser treatments may provide relief in a similar way.

A good management plan for chronic pain must be personalized. It should use a multimodal approach, which addresses the psychological component of chronic pain by treating depression and reducing anxiety and stress. A multimodal approach includes adjuvant therapies (antidepressants and anticonvulsants); an exercise and/or physical therapy component; and some form of CAM, which allows the person to manage moderate to severe chronic pain with the lowest possible dose of painkillers.

Here’s how Max, a person with hemophilia A, sums up personalized pain: “I’ve had to learn to understand my pain in ways that were perhaps discouraged at an earlier age. Pain is a friend; it’s part of me. I’m learning from it every day and learning to live with it makes it less of a burden.”

Acupuncture is safe for people on prophylaxis. If you’re considering acupuncture, first talk to your hematologist or the staff at your HTC.

Why, When, and How People Start Hemophilia Organizations

Laurie Kelley February 5, 2024

Social media has become a forum for advocacy, sharing ideas, and raising concerns about anything related to leadership in hemophilia. With the recent changes at Hemophilia Federation of America, people are concerned about leadership in our community: what is happening now, and what will happen in the future? I’m in the process of writing another book on leadership, so the topic has been on my mind. Here’s an excerpt from my book Success as a Hemophilia Leader, about when people decide to start hemophilia organizations, and why. It may not be directly relevant, but it has ideas to appreciate and think about.

Leaders start hemophilia organizations for many reasons. Whatever the reason, the founder of a new organization almost always reaches an emotional threshold: “I cannot accept this
situation anymore.” At that point, the new leader decides to take personal responsibility: “Something must change. I will change it.”

Do you see yourself in any of the following life-changing situations?

You need factor for yourself or your child. When there is no factor or advanced treatment in your country, you may request a donation of factor from charitable organizations such as Project SHARE and the World Federation of Hemophilia (WFH) Humanitarian Aid Program. These organizations might encourage you to start a hemophilia organization.

In 2017 Kunaal Mark Prasad of Fiji requested factor from Project SHARE via Facebook. At age 23, he had never had any. His doctors were reluctant to use concentrates, and instead
used cryo, a risky treatment. After his first factor infusion, Kunaal realized that he could help improve the lives of the estimated 60 people with hemophilia on his islands. He began reaching out, to find others and to start a hemophilia organization.

In 1998 Francisca Bardalez, from the Central American country of Belize, contacted LA Kelley Communications, for a factor donation. Francisca is the mother
of four boys—two with hemophilia. A single factor donation would help her boys, certainly.
But what then? I suggested that Francisca form a hemophilia organization. This was a
challenge, because Francisca lived in a remote area, where roads were rough and money was
limited. But her dedication triumphed. Francisca founded the Belize Hemophilia Society
on February 13, 1999.

This is how hemophilia organizations were formed with our help in Jordan, Tanzania,
Ghana, Zambia, Barbados, Fiji, and Rwanda. Watching your own child, a family member,
a fellow patient or friend suffer the excruciating pain of uncontrolled bleeding is a powerful
incentive.

You are inspired by another Hemophilia Leader. Leaders have strong motivational
effects on others. In the late 1990s, Raja Ammoury of Jordan, mother of a child with hemophilia,
read a story in the newsletter Hemophilia Leader about Jad Jadallah of Palestine. Jad is
a man with hemophilia who founded the Palestinian Hemophilia Association. Like Jad, Raja
is Muslim, and she felt a strong connection with him. Raja contacted me through her sister
in Ohio (US), an acquaintance of mine, and asked for advice. Inspired by Jad’s success, Raja
formed the first hemophilia organization in Jordan.

Hemophilia Federation (India), one of the largest hemophilia organizations in the
world, was founded in 1983 by Ashok Verma, a person with hemophilia. Ashok was inspired
by another leader, Professor Pier Mannucci, an Italian hematologist who also served as vice
president medical of the World Federation of Hemophilia. Professor Mannucci oversaw the
amputation of Ashok’s leg in Italy, and every night during the recovery period, Mannucci
visited Ashok as his doctor, but gently pressed him to consider starting a hemophilia organization in India. Ashok returned to India undecided. But Mannucci didn’t give up. He called Ashok daily to encourage him. Ashok was inspired by Mannucci’s attention and care. He
found his calling as a new Hemophilia Leader.

You want to start a chapter. At the WFH Congress in Montreal in 2000, I met
María Andrea Robert of Argentina, a young mother of a child with hemophilia. María told
me, with many tears, that she felt her national hemophilia organization was not reaching
families like hers in remote areas of her country. María briefly considered starting a new
organization—a second organization.5 But after careful consideration, María decided to
open an affiliate—a chapter—to coordinate with the national organization in Buenos
Aires. She could learn from the staff and use their resources, yet channel some of these
benefits to Cordoba, where she lived. María now runs a successful chapter and works well
with the national organization.

You have hemophilia and a special skill. It’s fortunate when someone with hemophilia
and a specialized skill, such as lobbying, medical knowledge, or public relations, can become
the leader of a hemophilia organization. Yuri Zhulyov is a lawyer with hemophilia. As president
of the Russian Hemophilia Society (RHS) for the past 20 years, Yuri brings enormous
talent and skill to helping decipher Russian law and moving his programs and goals through
the Russian legal system.

You resurrect a nonfunctional hemophilia organization. Your country may have a
hemophilia organization that is nonfunctional. The governing board never meets, the office
is deserted or nonexistent, and there is little or no communication. This happened in Puerto
Rico, an island territory of the United States. Yolanda Vega, the concerned mother of a child
with hemophilia, eventually tracked down the former president of Asociación Puertoriqueña
de Hemofília—who confessed that he was too busy to manage it. Rather than start a new
organization, she formed a new board and drafted a new constitution, also called bylaws.
Within one month, the Puerto Rican Hemophilia Association was reborn.

You are a physician and want to help patients. There may be nothing nobler in our
hemophilia community than a dedicated physician who becomes part of, or creates, a
hemophilia organization. He or she may already be struggling with the country’s lack of
resources, and may have a large caseload of not only hemophilia patients, but patients
suffering from other blood disorders or cancer. Many physicians offer free treatment, work
long hours, and open their hearts to these patients. One such physician is Dr. Gillian Wharfe
of Jamaica. She gives an extraordinary amount of time to treating hemophilia patients. She
offers her leadership and medical assistance to the Jamaican Hemophilia Association.

Sometimes, as Gandhi once said, we need to be the change we want to see. HFA is looking for board members right now; you can be apart of this change, if you have the vision, passion and skill to be a Hemophilia Leader.

Remembering a Pioneer in Medicine

Laurie Kelley January 28, 2024

I subscribe to “This Day in History” app, which daily sends along fascinating tidbits of history that happened that day. This past week, on January 23, my phone dinged bright and early: this day in 1849 the first female doctor in America was awarded her medical degree: Elizabeth Blackwell.

Who was this daring and pioneering woman?

This was in a time when medicine was still in its infancy. I read in a book about this era that central Baltimore was an unsanitary backwater without municipal sewers. Bathwater, chamberpot contents and manure flowed across cobblestones. Water was contamination. London would soon be ravaged by a cholera outbreak that later gave birth to public health.

Elizabeth Blackwell was born near Bristol, England on February 3, 1821, the same town that the first family with hemophilia in America hailed from, ironically.

Blackwell came from an unusual family, full of activists. She was the third of nine children of Hannah Lane and Samuel Blackwell, a sugar refiner, Quaker, and anti-slavery activist. Blackwell’s famous relatives included brother Henry, a well-known abolitionist and women’s suffrage supporter who married women’s rights activist Lucy Stone; Emily Blackwell, who followed her sister into medicine; and sister-in-law Antoinette Brown Blackwell, the first ordained female minister in a mainstream Protestant denomination.

A few years after the Blackwell family moved to Cincinnati, Ohio in 1832, the father died, leaving the family broke. Elizabeth, her mother, and two older sisters worked as teachers. Blackwell was inspired to pursue medicine by a dying friend who said her suffering would have been better had she had a female physician. But there were few medical colleges and none that accepted women, though a few women became unlicensed physicians, as did many men.

Blackwell eventually “boarded with the families of two southern physicians who mentored her. In 1847, she returned to Philadelphia, hoping that Quaker friends could assist her entrance into medical school. Rejected everywhere she applied, she was ultimately admitted to Geneva College in rural New York, however, her acceptance letter was intended as a practical joke.

Blackwell faced discrimination and obstacles in college: professors forced her to sit separately at lectures and often excluded her from labs; local townspeople shunned her as a ‘bad’ woman for defying her gender role. Blackwell eventually earned the respect of professors and classmates, graduating first in her class in 1849. She continued her training at London and Paris hospitals, though doctors there relegated her to midwifery or nursing. She began to emphasize preventative care and personal hygiene, recognizing that male doctors often caused epidemics by failing to wash their hands between patients.” *

In 1851, she returned to New York City, and with help from the Quakers, Blackwell opened a clinic to treat impoverished women. In 1857, she and her sister, now also a doctor, opened the New York Infirmary for Women and Children, with colleague Dr. Marie Zakrzewska. They provided positions for women physicians.

In 1868, Blackwell opened a medical college in New York City. A year later, she placed her sister in charge and returned to London, where in 1875, together with Florence Nightengale and Thomas Huxley and others, created the first medical school for women in England. She became a professor of gynecology here. She co-founded the National Health Society in England (which today services people with hemophilia) and published several books, including an autobiography.

She had a fascinating personality, and was a dedicated advocate and activist of many causes. A pioneer in medicine and champion that perhaps many of us in bleeding disorders can appreciate.

*Chicago – Michals, Debra. “Elizabeth Blackwell.” National Women’s History Museum. 2015. www.womenshistory.org/education-resources/biographies/elizabeth-blackwell.