Bleeding Disorder Awareness Month

U.S. Presidents and Hemophilia

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 40th 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

Tamer’s Story

Tamer in 2022

March is Bleeding Disorder Awareness month, and we are celebrating by sharing the stories of those with hemophilia in developing countries. Tamer Hanna is from Egypt, and I just visited him for the first time in our 16 year history. I asked him to share his story, in his words, of growing up with hemophilia in Egypt.

“Hemophilia!” the two young parents exclaimed.

“Yes, it is a lifelong bleeding disorder,” explained the doctor to the young parents. They were dreadfully puzzled while looking at their first child who had just been circumcised, as the doctor stitched the wound to stop the bleed. The parents’ families had no history of hemophilia and they had never heard about such a rare disorder. They left the clinic with little information and a lot of precautions. The two young parents had no idea what effect a bleeding disorder would have on their family’s life or their child’s future. They felt overwhelmed. They both were sure that their life from that day on would never be as usual as the life of any parents.

In Egypt, children with hemophilia received minimal health care and follow-up during the 1970s. That was to be expected: hemophilia care in Egypt started in 1968 and mainly took place in Cairo, the capital, so patients from other cities had to travel to Cairo for treatment. I still remember my father getting up early every Monday at 3 am so he could catch the first public bus to Cairo to buy me just one vial of 150 IU factor VIII. The national governmental company only sold the factor only on Mondays, and would allow only one vial per patient. My father had to travel as early as possible because “the early bird gets the worm.” Many patients couldn’t even find a vial to buy if they reached the center a little late on Mondays— all the vials were sold. And 150 IU was the only assay size available in the governmental center that sold plasma-derived clotting factor.

Tamer in 1990s

Like most Egyptian hemophilic patients, I spent many years in this dilemma of on-demand treatment strategy. Due to cost and resource constraints of plasma-derived clotting factor, I used cryoprecipitate to manage my bleeding episodes. I also used fresh frozen plasma, although it wasn’t an effective way of treatment. I even used basic first aid treatment like RICE when there was not treatment available on time.

Not getting a proper treatment on time led to a lot of bad side effects. Like most hemophilic patients in developing countries, I am suffering from the most common complications, such as weak muscles, stiffness and limited range of motion in most of my joints.

But the severest complication happened to me when I was 24 years old. A fracture in my left leg and the lack of enough factor to have surgery caused a disaster. In March 2001, I was able to come to the United States, to Tennessee, where an Egyptian hematologist named Dr. Wahid recommended amputation above the knee. I returned home to Egypt a year later with no left leg and a prosthetic. It’s the same prosthetic I have this very day. It was frustrating and devastating for a young man to lose his leg when he was still planning for his future, but the glass-is-half-full part was that I learned a lot and I have met wonderful, helpful, philanthropic people in the US. Also, I learned to use the computer and the internet. I have been taught to cope and adapt to the new circumstances. Knowing how to surf the internet was the step that enabled me to get in touch with the person who has changed my life from misery to happiness for years so far.

Tamer in 2003

I have heard the name of “Laurie Kelley” when I was in the US, so the first thing I did when I returned to Egypt was to google her name. I started to read a lot about her projects. I thought she was an incredible special person to do all these services for people she hardly knew. I wrote a simple email asking for her help with medicine, then I crossed my finger for a reply. Surprisingly, she replied much quicker than I thought. For more than 17 years we have been writing emails. I can’t recall how many times she donated factor to me, but I believe she did it welcomely tens of times. These 17 past years were the best period in my life. It is a blessing to find a vial of factor in your fridge when you badly need it. I didn’t have this privilege before knowing Laurie.

These past 17 years were the period of flourishing and success. I got married and had two children; I accomplished my master degree in psychology; I worked without taking long days off; I have supported my family financially and I was psychologically stable and safe about the future.

Meeting her here in Egypt in February 2022 was culmination for a long friendship and support relation. Years before, she promised to visit me, and she always keeps her promises. Meeting her for the first time after exchanging emails for 17 years was a remarkable day. She promised to come again and I am sure she will do it when she has the time. Before Project SHARE, I spent night after night in pain, and month after month bedridden. Now, I am much better and safer because of this wonderful pioneer humanitarian person who believed in her abilities and started a humanitarian project served the bleeding disorders community worldwide since 1989.

I was helped once I asked for her help, but there are thousands of Egyptian hemophilic patients who need help too. After 40 years, there are 20 hemophilia treatment centers in Egypt and the Egyptian Society of Hemophilia (ESH) was founded to help with increasing awareness and improving care and empowering people with inherited bleeding disorders. Even still, there is much to be done and we need the help of everyone on this earth to save more lives. It is heartbreaking to read about the death of a human being because the lack of proper amount of factor to stop his bleed. There is a great gap between the number of patients and the available amount of medicine in many developing countries. The government is trying to improve health care; the budget allocated to care and treatment for inherited bleeding disorders is progressively increasing but we are still on the first step of a long road. Thank you, Laurie, and thanks to everyone who has donated factor to Project SHARE. With everyone’s help and Laurie’s zeal, the dream to save thousands of lives is achievable one day.

Don’t Forget VWD This Month!

I’m in Egypt on vacation, and to visit Tamer Hanna, a very special hemophilia patient, and one couple in the group of tourists I am with mentioned they have visited the Äland Islands in Finland. My ears picked up; that’s where VWD was discovered! It was a great opportunity to educate them about the most common inherited bleeding disorder.

March is Bleeding Disorder Awareness Month, and I think it’s a great time to remember those with the most common inherited bleeding disorder in the world.

When did this bleeding disorder get identified?

Dr. Erik von Willebrand

Von Willebrand Disease was named after the doctor who first identified it: Dr. Erik Adolf von Willebrand, a Finnish physician who first described VWD in 1926. He had been studying an unusual bleeding disorder in the local communities, called Älandic hemorrhagic disease.

In 1925, while in Helsinki, Dr. von Willebrand evaluated a five-year-old girl named Hjördis. She lived on the remote island in the Baltic Sea, between Sweden and Finland.

Hjördis was bleeding excessively from her lip following an injury. She had a history of nosebleeds and bleeding following tooth extraction. She was one of 12 children, 10 of whom showed bleeding symptoms. Sadly, four of her siblings died of uncontrollable bleeding between the ages of two and four. Hjördis herself later bled to death during her fourth menstrual period.

When Dr. von Willebrand discovered that 23 of 66 family members (16 females and 7 males) also had bleeding problems. The history of the original Finnish family has now been traced back to 1750! Over 1,000 members, with 125 known to be affected, and 12 who died from bleeding.

Dr. von Willebrand concluded that this was a previously unknown type of hemophilia, characterized by prolonged bleeding time and mucocutaneous bleeding. The disorder affected both males and females. Dr. von Willebrand called this new disorder “pseudohemophilia.” But because he believed platelets were involved, he later renamed the disorder “constitutional thrombopathy.” In 1928, four American doctors described a similar disorder, but it wasn’t until decades later that the actual blood-clotting protein involved was identified. The protein—von Willebrand factor (VWF)—and the disorder were named after the doctor who first described the unusual symptoms.

It’s estimated that VWD affects up to 1% of the world’s population, which dropped the jaws of my fellow tourists. Overlooked for too long in favor of focusing on hemophilia, I think VWD is now getting the recognition, and help, it deserves. But women in countries like Egypt still suffer and need education and medication. We can all help with that!

Visit the World Federation of Hemophilia and Save One Life to learn more.

Excerpted from A Guide to Living with von Willebrand Disease by Laureen A. Kelley and Paul Clement.

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