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.

Egyptian Bull God in Hemophilia

I’m in Egypt, first to visit a patient with hemophilia (read this story in last week’s blog!) and second to vacation and learn all I can about ancient Egypt. It’s an incredible tour, complete with lectures and a visit from the famous Dr. Zahi Hawass!

As I am learning about the ancient gods and pharaohs, one symbol keeps appearing on the carvings on the temples and tombs. A bull with the sun sign between his horns. Where have I seen that before? It’s the logo for the pharmaceutical company Novo Nordisk, which is a Danish company.

Who was this god? He is Apis, one of the sacred animals of ancient Egypt. He represents strength and fertility. His mother is sometimes listed as Hathor, an extremely important goddess, whose temples are everywhere. I visited some and carvings everywhere show the cow and bull.  

Our guide, Mohammed, tells me Hathor is the goddess of health and motherhood, and was also the mother of the god Horus, one of the most important gods of ancient Egypt.

I just found this all so interesting. The word “logo” is defined as “meaning,” so it’s always important to choose a logo (image, color, size and intensity) that has specific meaning to the company. I think Novo Nordisk chose well!

Visit to Egypt: Sharing with the One

Tamer Hanna

Tamer Hanna is blessed: intelligent, handsome, fluent in English, beautiful wife and two wonderful children. At age 45, he has a steady income and is self-sufficient. He also has a problem: he has hemophilia. And he lives in Egypt, which does not receive enough donated factor so that he can have some at home, or even when he bleeds.

I met Tamer via email about 17 years ago, long enough that I can’t recall exactly when he contacted me, or how we became friends. It was about needing factor, and he knew that I donated factor. His story grabbed my attention and heart: he had had his left leg amputated above the knee due to uncontrolled bleeding. While this sounds contradictory, it’s true: bleeding into the leg can cause the leg to swell, cutting off various blood vessels. The trapped blood can become infected, gangrenous, threatening the life of the patient. In March 2001, Tamer was able to come to the US, to Tennessee, where an Egyptian hematologist named Dr. Wahid recommended amputation. While this is a story for next week, Tamer eventually returned home to Egypt with no leg and a prosthetic. The same prosthetic he has this very day.

I started sending him factor around 2006, and have continued also to this day. In fact on this trip, my first to Egypt, where I am right now, I had about $200,000 with of factor to give him. Egypt has become so difficult to ship factor to. This was the easiest way.

I had promised to meet with him one day, the latest promise was in 2018. He had given up asking when I was coming to see him. I only told him about this trip about three weeks ago, and sent him the flight itinerary so he knew I was serious this time!

I left last Thursday, and in 24 hours I landed in Cairo, and sailed through customs.

On Saturday morning, February 26, my driver Ahmed picked me up and after a couple of stock phrases from each of us (he spoke almost no English and I almost no Arabic), we were on our way. The streets of Cairo were clogged with auto-rickshaws, cars, trucks, buses, “microbuses,” and tour buses. Ahmed was a deft driver, weaving in and out of traffic on the unlaned highway. After a few heart-stopping moments, we would give each other the thumbs-up sign. Traffic was heavy and a 90-minute trip took almost three hours. I took in the towns and farms we passed in this ancient land.

We finally arrived at a modest concrete building, which housed apartments. Luckily there is an elevator. With only one leg, and always on crutches, it’s hard for him to get around. He works as a teacher of English as a second language at a nearby school. On his days off, he mostly stays home, in a small but comfortable apartment. The small balcony overlooks a busy side-street, directly across from the Coptic Christian church, of which he is a dedicated member.

Our meeting was surreal! Tamer asked ahead of time if he could hug me; something not common in conservative Egypt. But of course he could, and we did. We rode up to his floor, and seated ourselves in the living room. His wife Susan had gone to great lengths to prepare a feast for me: two kinds of soup (including the delicious molokhia), chicken, beef, vegetable rolls and my favorite, a baclava with ground beef in a fluffy pastry. It was delicious, especially after such a long ride.

His children, Dede, age 12 and David, age 10, politely stayed throughout the entire visit, and were well behaved and respectful. I had brought gifts for them, and they gave me a lovely teacup with Nefertiri on it!

We chatted for three and a half hours, about what life is like in Egypt when you are disabled. There are no disabled facilities or special treatment for those with chronic problems. Wheelchair accessible? Forget it. Access to factor for a random bleed? Not going to happen. Even getting married was a problem. Tamer had had prospective wives (“The girlfriend/boyfriend concept does not exist here,” he once told me), but all had backed out when they learned about hemophilia. Oh, it wasn’t his hemophilia that was the problem; what if they had a daughter and the disorder was passed on to a grandchild? He found love in Susan, who happens to be a first cousin. She is kind, loving, very funny, devoted to making a happy home for them all.

His children are learning English, and Dede wants to be a doctor someday!

I promised Tamer I would always find factor for him. He’s been a faithful friend all these years, soon to be decades, and I have no doubt our friends in America will always donate enough to help him.

Tamer works hard and yet earns in a month about what one nice meal would cost for 3-4 people at a nice restaurant. He doesn’t take vacations or go shopping or attend sports or concerts. He doesn’t exercise for fear of causing a bleed. Think about this: he messaged me this once, “Many times I imagine what my life would be without this factor that you guys would throw away. My family wouldn’t find a loaf of bread to eat because the father, who is the only working person, would be bedridden. There would be no hope for giving my children education. As long as I am on my feet working, these three people in my small family will be safe and secure. Laurie, you are doing more than you imagine.”

But I can only do this with everyone’s help. So thank you, everyone, who has donated recently, because your factor went to help tamer.

Tamer and I share the same faith, which says, “Anyone who has two shirts should share with the one who has none, and anyone who has food should do the same.” (Luke 3:10-11)

Substitute factor for a shirt and food and this is what we are doing for Tamer. Thank you, Tamer, for a great visit, and thank you hemophilia community in America for sharing “with the one.”

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