Hemophilia in islands

Island Life a Struggle with Hemophilia: Arindra’s Story

Laurie Kelley June 9, 2024

Located off the southeast coast of Africa, Madagascar is the fourth largest island in the world. It is famous for its unique wildlife. Since gaining independence from France in 1960, Madagascar has experienced political instability. The economy is supported by exports of paddy rice, coffee, vanilla and cloves. Despite a wealth of natural resources and active tourism industry, it remains one of the world’s poorest countries, and suffers devastating cyclones. It is heavily dependent on foreign aid—and this includes hemophilia. With a population of just over 29 million, life expectancy is only about 68 years. Nearly 60% of the population is under age 25. Health expenditure is 3.9% of GDP (compared to 17.3% in the US).

This is a little story about me. My name is Arindra Ravelojaona. I was born December 16, 1975 in the Region of Tulear, in south west Madagascar.

I just have one youngest brother without hemophilia. My parents were simple people. I’ve finished high school in 1994 and I liked learning English language. But I lost my father when I was 20 in 1995. My mother was a housewife, earning no income, and because of the death of my father I couldn’t follow my studies. I had to help my mother for everyday living.

Arindra: A mother who never gives up

So I got married at age 24 and had a baby girl in 1998. In 2001, I had Mikaela, my first son.

When he was three, in 2004, we have decided to circumcise Mikaela. It was performed at the hospital, but then a problem started—the blood didn’t stop.  My husband and I went back to thie hospital where the doctor sutured him, but it was still bleeding. Mikaela had blood transfusion everyday for about five weeks.

At that time my husband and I worked with the Shattenbergs, a missionary family (that’s why I know a little about English). They helped us by sending us to Antananarivo, the capital of Madagascar, through “Helimission.” We went from the hospital here in Majunga, to the airport, got in the small plane of the Helimission, and ninety minutes later arrived at the airport of Antananarivo. Thirty minutes later, we were at the one the biggest hospitals in the capital: HJRA, a large children’s hospital.

One again Mikaela had surgery and we continued with the blood transfusion. The medical team did some analysis there and sent the results to the “Institut Pasteur.”  We waited until he recovered and finally had the result: hemophilia B.

Mikarla’s father couldn’t accept the diagnosis. The doctor explained to us what our son had, and that our son inherit it from me. Two years later, in 2006, my husband left me and my two children for another woman. By grace I had a job at the French school next to our house, so I could feed my little family.

Years went by and in 2009, I met someone. He accepted to walk with me and my kids, and we got married in 1992. I gave birth to a second son, Toky Hir’Aina, in 1993, but the same problem happened again. When he started to crawl, he had bruises on his knees and we knew that he has hemophilia too.

In 2019 we decided to circumcise our boy. Fortunately by then a rich family that had a son with hemophilia decided to build the Malagasy hemophilia association: “Association pour le Bien Etre des Hémophiles à Madagascar” (ABEHM), which is now affiliated with the World Federation of Hemophilia.  So we had some boxes of factor IX at that time because their son has severe hemophilia B.

Mikaela
Toky

So Mikaela, my first son, didn’t receive factor IX until he was eleven years old. My second son received it since he was little. When we have planned to circumcise him, we had time to prepare him. We had almost a one week’s supply of factor IX and then we did the surgery.

We had to stay at the hospital until he recovered, for almost 20 days. Ten days after we were back home, my second husband decided to leave us also, telling me: “I’ve lost my time with you. You didn’t say the truth to me. This boy won’t be normal. I need to have a normal boy.” These were his words in court; he was asking for a divorce.

That was the worse day that I’ve ever had. I cried all day long for a long time. But God is in control; I didn’t give up.  We passed through Covid-19 and I found a new job at the Anglo Franco School where I work until now. I work for 28 hours a week and I earn $1.50 per hour. That gives only $42 a week. So I had to find an extra job. In total, now I get double this amount every month.

But if I calculate all the expenses, it’s $250 per month for house rental, school and college fees, food and medicine. But most of the time I don’t earn that amount.

Since January 2024, we eat twice per day: a small breakfast and lunch. If there is a leftover, we take it at dinner time. Costs are increasing every week. And sometimes I have debts.

One sad story is about Mikaela, because of the lack of enough factor IX, he couldn’t continue his studies. He has only finished primary school. He had bleeding and pain with his knees; he was in a wheelchair for two years [2014-2016] and then we did physical therapy and he walks now.  But when he feels tired his knees and ankles swell; all his joints are hurting him.

He is clever; he has a keen mind about computers. But because of his condition, he stays at home and help with the household.  Toky Hir’Aina, his little brother, has just finished primary school.

He is in grade 6. He is really intelligent. He was the first in his class for the three first periods.

I asked God every day to help me with “angels” that He will send to our life; to help us to face the expensive life. As you know, Madagascar is one of the poorest states here in the Indian Ocean.

But it doesn’t mean that I will give up—no, no, no!

Some other boys with hemophilia in Madagascar

I am single now and I am not going to find another problem. I am focused on the future of my kids. I’m taking care of Mikaela and Toky Hir’Aina and my mum, who is 74 years old. She is a big help, because she helps at home.  We had a real problem for the last nine months because, it was August 2023 when the boys last had factor IX.

Previously,  we participated in the annual camp for the family and the patients, but because of our financial situation and the lack of factors, we didn’t attend.

I’m a volunteer of the Regional Antenna of our national organization here in the North West of Madagascar. There are few boys with hemophilia A and B here and they are also having a hard time.

I will always try to do and give the best I can do. But it’s not enough. I’m asking anyone reading this to help through their kindness, to help us with living expenses. Thanks a lot for reading. I hope that God will answer my prayer through all of you.  

If you are interested in helping one time, please contact me: laurie@kelleycom.com

La Vida Hemofilia: A Visit to Puerto Rico

Laurie Kelley January 23, 2011

I have a strong affection for Puerto Rico and its hemophilia community. I first visited in 1998 after speaking with a young mom, Yoli, who called me to ask about her out of pocket costs, which were extraordinary. The timing was good, as I was beginning to wonder about the state of care there. All our newsletters to the Puerto Rican hemophilia foundation were returned, and there was no phone. Yoli did a bit of investigating and learned the nonprofit had become defunct. With a little more discussion, she decided to revive the nonprofit, and the new Asociación Puertoriqueña de Hemofilia (APH) was born.

Yoli and her husband Rene worked hard to build the new association up from the dust. And they did a fabulous job. Soon they had money for camps, scholarships and travel. They upgraded the only factor product on the island to a more advanced product. Things were going very well!

Then Yoli left to come to the US (mainland, that is; Puerto Rico is part of the US as a possession). Another young parent and lawyer, Johnny Marquez, took over the helm a few years back. Like Yoli, he has a son with hemophilia. I had stepped back so far I kind of lost track of what was happening there, and decided that the dead of winter, with one of the snowiest winters in history, was a good time to make a social call.

Zoraida Rosado and I headed to San Juan on Wednesday, in between huge snowstorms in New England. Puerto Rico is often called the Shining Star of the Caribbean, renown for its pristine beaches and water, lovely climate and friendly people. While English is spoken, not everyone speaks it. I wondered if this created a barrier to hemophilia care since so much is available in English.

On Friday night we met socially with families and the executive team of the APH. Johnny and wife Tammie opened their home for everyone. We had a lovely time and Johnny filled us in on how things work in Puerto Rico.

First, there are about 180 people estimated to have hemophilia, and about 125 of these are registered. Though a small island, many people live far outside the capital, making it hard for them to come in to get care at the main hospitals. And despite being a US possession, medical care is definitely offered more like a socialist country. The government has a budget for factor, opens a “tender,” and pharmaceutical manufacturers offer bids on their products. Usually the government goes with the lowest bids per unit of factor. With a limited budget, the government typically selects plasma-derived products, as they are able to buy more product within the budget limits.

Just recently, a recombinant was selected. One of the moms I spoke with was a bit frustrated that she must go to the hospital each time her baby has a bleed. She is already to start to learn home infusion, but the hospital didn’t want to offer this. So she bought factor herself, out of pocket! I can’t imagine that happening on the mainland.

Overall, the children looked great, well cared for and very happy. We brought some of our books in Spanish, and hope to send more materials.

Insurance reform will also impact Puerto Rico, but how we just don’t know yet. I’ve invited Johnny to come to one of our Pulse on the Road seminars, so he can learn more and bring back information to our very warm and hospitable Latin friends on the beautiful island of Puerto Rico.

Thanks to Johnny and Tammie, and everyone who made our stay so pleasant!

Book I Just Read
The Imperial Cruise by James Bradley
In 1905 President Theodore Roosevelt sent a large political delegation, including Secretary of War William Taft, and his own daughter, the outspoken and rebellious Alice, on a cruise aboard the Manchuria to Japan, Korea and Hawaii to pave the way for better foreign relations. What was unknown to the public, and deliberately kept secret from Congress, thus breaking the Constitutional law, was that Taft and Teddy made secret alliances with the Japanese against Korean and China that left an open door to the Japanese to later invade these countries, and, Bradley postulates, lead to the attack on Pearl Harbor. The history he presents is not new, but Bradley makes much of TR’s racism, a topic most would like not to discuss. TR was just a product of his time, some might say. A fair point.

The topic of breaking the Constitution is excellent; Bradley’s depictions of what our country did to the Filipinos are searing; our military’s actions are unforgivable. You will be shocked if you have never heard this history before. He is to be applauded for reminding us that America has had (and still has) imperialistic motives. But the book is very hard to read, not because it is too scholarly or bogged down in minutia of history (it’s light on all that, if anything), but because of the vendetta Bradley apparently has against the Roosevelts. Bradley seriously damages his credibility as an author by using quotations grossly out of context and cherry-picking vignettes from TR’s life to paint a caricature of a man, instead of fairly raising the questions of his racism, nationalism and motives. He refers constantly to “Big Bill” (the 300+ pound Taft), “Princess” Alice and “Big Stick Teddy,” almost in a sneering, snarky way. Not just once, but over and over and over. You wonder when the editors checked out. Bradley also seems to have a vendetta against Christians; he correctly points out that Christian missionaries started the opium trade in China, making so many businessmen (and reverends) in America rich, but created a product Bradley refers to, again over and over and over, as “Jesus-opium.” And that’s only one example of his seemingly anti-Christian tirade. You find yourself wincing, and wishing Bradley would grow up a bit, as a man and as a writer. I felt that I was reading a weak term paper from a college student at times (too many times). He also jumps to historical conclusions, while missing key information in his theories and hypotheses. Most disappointing, coming from the author of Flags of Our Father, later a Clint Eastwood movie. Maybe, just as he repeatedly accused TR, Bradley has become slave to publicity, and needed to kick the readers’ hornet’s nest to get some media attention. He didn’t have to; the story of what happened in 1905 doesn’t need any flourish. It’s a sad chapter in our history. But there are probably better books to read on the subject than this one. Two stars.

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