Well, India may have landed a spacecraft on the moon, but we restored a leg on a boy.
Zaid Raja is a young man from Bihar state, which is impoverished. He has hemophilia A. Due to a pseudotumor—something you almost never see in the US—he had his leg amputated in December 2022. His father is a farmer; think of farming like in the 1880s in the US. Difficult, back-breaking, just earning enough to get by. And then to have a son with so many medical problems. Hemophilia and poverty together create exponentially greater hardships. While India can put a craft on the moon, so many of its people suffer as if they were back in the 19th century.
But that’s where we step in.
The US is truly the engine that drives the world, especially in hemophilia care. We have so much factor—though we are about 4% of the world’s population with hemophilia, we consume about 33% of the world’s factor supply. Just think about that. Our healthcare system is commercial, which means there is a lot of consumption—and waste. We try to ensure that nothing goes to waste. So we donate millions of IU of factor.
And occasionally, can assist to buy prosthetic limbs for these guys in need.
Rather than continue to be a burden with hemophilia and now only one leg, we bought a great prosthetic leg. Look art Zaid now! (See video below) Not just mobility restored, but dignity restored. We wish him well, and I hope to see when when I next visit India!
Thanks to the staff at Christian Medical Center Vellore for such great care for our patients!
It’s school time again across America! Are you ready? One way to get ready is to think about medical needs during school hours.
The school nurse is often your first line of defense when seeking a partner for good medical treatment during school hours. You might be able to infuse your child in the nurse’s office or involve the nurse in the infusion.
But when you meet with the school nurse, either alone or with your child’s team of teachers, it’s probably safe to assume that the school nurse doesn’t know much—or anything— about hemophilia. Some nurses may have a passing familiarity with hemophilia, but because hemophilia is so rare, most do not.
If you’re unsure of the school nurse’s understanding of hemophilia, ask your HTC nurse to intervene and act as a resource. Is the school nurse willing to be involved with hemophilia and assume some responsibility for your child? If so, then this nurse will be helpful.
Unfortunately, not all schools have part-time or full-time school nurses. According to the National Association of School Nurses (NASN), only about 40% of all US public schools have a full-time nurse; just 35% have a part-time nurse; and 25% have no nurse at all. And if your child attends a private school, it’s likely your school will not have a nurse. In schools with a part-time nurse, the district may have a full-time nurse, but the nurse rotates among several schools in the district and may visit your child’s school once a week at the most.
There are no US federal laws governing school nurse requirements, and school nurses are not all equal in education or professional abilities. School nurses fall into two types: registered nurses (RNs); and licensed practical nurses (LPNs) or licensed vocational nurses (LVNs). LVNs and LPNs are the same; they just go by different labels in different states. RNS have a bachelor’s degree from an accredited nursing program. LPNs normally complete a year of coursework, and they work under RN supervision on the job. In most states, LVNs/LPNs are not authorized to give IV meds, including factor. Check the regulations in your state.
Ask your school nurse if they are authorized and comfortable giving an IV infusion. Some RNs will not give IV medications, and you should not expect, or ask, any school nurse to access a port. Why? Because ports require special procedures that, if not followed correctly, can increase the risk of infection. In schools without a nurse, the nurse’s office is usually staffed by a nurse’s aide or health clerk—neither is qualified to administer IV meds. Although state laws vary on giving medications at school, your child with hemophilia is protected by federal laws. So if your child’s school does not have a nurse, it is the district’s responsibility to provide a nurse to assist your child at school and on field trips.
Excerpted from Raising a Child with Hemophilia, 2023
There was an exciting development at the national bleeding disorder conference in Maryland this past week. This is the largest gathering of our community in the US, and some exciting news was announced. The National Hemophilia Foundation (NHF) has changed its name, after 75 years. Along with that, it also has a new logo.
But why? And why now?
Branding
Branding a cattle for identification
All personalities, companies and organizations need an identity that the public recognizes and that creates positive associations. With bleeding disorders, this identity includes most likely humanitarianism, proactive behavior, and medical progress.
Identity is reinforced through marketing materials—a logo, business cards, website, and stationery, which all symbolize and define. This is called branding. Branding is what farmers, cattle owners and cowboys do to their livestock and horses, in case they get lost (or stolen). A special marking is burned into the hide of the animal that easily identifies the ranch or individual owner.
For companies, the “brand” is not burned into the hide! It’s a logo—this is a design, a visual symbol that represents the organization’s identity, character, focus, and sometimes culture. Much like the colors and symbols of each country’s flag, the colors, shape and symbols of a logo say clearly who and what the company or organization is.
A logo is one of the main components of branding and should be created after the mission and vision are created. NHF already had a logo, in use for decades. It was replicated around the world too, with the World Federation of Hemophilia, and various chapters and other countries. The logo, in various forms, showed the outline of a human, white inside, leaning on the figure of a person, with red inside. Clearly, people without factor leaning on a person with factor. Over time, the board of NHF decided this was a bit negative, and changed the logo to two upright figures, one white and one read, with arms about one another. Supporting but not dependent.
Brands Evoke Emotions
And the reason for that change is emotional connotation. What emotions did the leaning, white figure conjure up? Weakness? Dependency?
An effective logo elicits an emotional response that creates positive associations. Footwear manufacturer Nike uses a simple “swoosh” design that is contemporary, upbeat, and active, implying energy and speed. The logo of the United Nations depicts olive branches, a sign of peace, embracing the earth.
Even with the positive connotations of the two figures being equal and embracing, NHF decided that this too was outdated. And logos can be updated to reflect changing sentiments and beliefs. Time for a change!
Inclusivity, Welcoming
The new logo is interesting, and reflects changes in the mission of NHF. NHF is no longer just about hemophilia. It is now the National Bleeding Disorders Foundation (NBDF). This title infers inclusivity, which is not only a catchword and movement in society today, but has vital ramifications for our community. NHF implies (and states) hemophilia. NBDF implies and states: hemophilia, rarer bleeding disorders, von Willebrand disease, women with hemophilia, and more.
The new logo reflects this. It has changed from two figures, which is a concrete representation, to the more abstract circle of blood drops. This reflects a more graphic representation of our community. More beautiful is the decision to make the blood drops a palette of colors. To me, this represents diversity, also a catchword and movement in society. Inclusive of ethnicity, gender fluidity, language, heritage, and more.
In logo creation, circles are more fluid than squares; circles are softer, used to represent continuity and eternity, and in general more pleasing to the eye than angular shapes like triangles and squares.
This simple logo with multiple colors is a great choice and can more easily be used in marketing in dozens of ways. By the way, NBDF’s new tagline is a slight variation of one I’ve been using for about 20 years, Mine is Education, Innovation, Compassion.
Change is hard for many to accept. Let’s see how the community reacts to this name change and new logo. I hope it is as positive as the new logo feels to me.
Officina of the Benedictine monastery at Schwarzach
It’s strange to think of pharmacies as beautiful. These days, they are more like hospital dispensaries, or small stores which contain many things besides medicine.
But not long ago, they were magnificent places to see. Last week we showed how, in the East, the Arabs began the first pharmacies. In the West, before science could determine a proven cause and effect for illnesses, many people viewed illness as a punishment or a trial from the gods or from fate. So throughout history there were often close connections between theology and medicine. Often, the healer was a person of divinity or faith.
In ancient Greece, Asklepios, a son of Apollo, was venerated as a powerful god of healing. The sick would spend the night in his temple, hoping the god would appear in a dream, bring healing, or reveal the treatment. His daughter Hygieia is considered as goddess of health. Her very name gives us the word “hygiene.” The Romans adopted Asklepios and called him Aesculapius, embodied in the snake.
Emperor Frederick II in 1231 officially recognized pharmacies as commercial entities with duties and rights. These dispensaries or apothecaries first began as medieval stalls or huts, surrounding churches, where people would buy herbs, oils and other remedies. Later these apothecaries were run out of offices, and medicine was dispensed from a window. Medicine would advance during the Renaissance from belief in miracle cures, faith healing, alchemy and superstition, to scientific exploration, experimentation, discipline and higher knowledge.
Early pharmacies in the West were beautiful, with therapies on display in porcelain or ceramic jars with Delft-like color and decorations, seated in rows on mahogany shelves. The Officina of the Benedictine monastery at Schwarzach, in the first half of the 18th century, was beautiful, with Baroque style furnishings. In the center of the pharmacy was the preparation table, with sixty carefully labeled drawers. Aesculapius, the antique god of healing, and his daughter Hygieia, kept an eye on the preparations. They hold their typical symbols, the staff and the snake. We still use the staff and snake to denote medical treatment.
You can view this pharmacy in Heidelberg, Germany at the Pharmacy Museum, as well as several others, to get a sense of how beautiful they were.
Notes from a visit to the German Pharmacy Museum, 2015
Specialty pharmacies are vital and integral to a life with a bleeding disorder. But do you know the origin of pharmacies? I visited the Pharmacy Museum in Heidelberg, Germany once, and wanted to share what I learned.
Preparation of medicine, script of Galenos c. 10th century
The word “pharmacy” comes from the Greek word pharmakon, meaning medicine, poison, or magic potion! Long ago, diseases were often regarded as punishment by the gods, so priests as well as physicians practiced the art of healing.
Ancient beliefs about disease led to tailored methods of treatment. For example, in the miasma theory, it was believed that “bad air” caused disease, and treatment might be to avoid poorer places, which smelled bad, or to go to the country if possible for fresh air. From the ancient Greeks came the notion of the four “humors”—blood, yellow bile, black bike and phlegm. If these were not in harmony, a doctor might practice “bloodletting”—slicing open a vein to allow the bad humors to drain out.
Arabian Islamic Medicine: First Pharmacies
During the rise of the Arab empire, which covered much of North African in the mid-7th century, the Arabs dominated from Seville to Samarkand, and from Aden to Tbilisi. They translated ancient texts of Jewish, Indian and Persian origin. The combination of antique and Arabian knowledge initiated an amazing era of medicine, which considerably expanded medical treatments.
Walafrid Strabo (c. 809-849)
In fact, the first pharmacies emerged in Baghdad, then the center of the Islamic world!
Pharmacies in the Christian Occident
After the downfall of the Roman Empire in 455 AD, medicine was practiced in the monasteries and convents of the Christian west. Educated monks and nuns worked there both as doctors and pharmacists. Some, like Walafrid Strabo (c. 809-849) and Saint Hildegard of Bingen (c. 1098-1179), increased medical and pharmaceutical knowledge with their scripts. Medicinal plants were grown in the monastic gardens. St. Hildegard has been considered by scholars to be the founder of German scientific natural history. And Strabo learned to create medicine, and brew beer!
Relevant antique scripts were kept, studied, and copied in the monasteries, including those of Islamic medicine. So both ancient and Islamic texts had a lasting influence on the creation of a future western pharmacy.
The medical school of Salerno in Italy, Schola Medica Salernitana, taught antique medicine, kept close contact to the Arabian world and is considered to be the first center of scientific medicine in the west. Clerics and laymen, and Christians and Muslims met at this school which was open to everyone—even women!
Schola Medica Salernitana
Next week: The Beauty of Pharmacies in the West
Source: Notes from a visit to the German Pharmacy Museum, 2016
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