Laurie Kelley

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.

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.

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

Mothers Focus on Mental Health: Meet Debbie de la Riva

Laurie Kelley May 26, 2024

May is the month of Mother’s Day, and also is Mental Health Awareness Month.

To finish up the month, I want to give a shout out to Debbie de la Riva, mother of an adult son with hemophilia and dear friend, and licensed professional counselor, who created a program to help raise awareness of mental health issues in our community, as well as ways to address them. Her program is an invaluable resource. As we know, any chronic disorder must be treated medically. But mental health is important as well.

Debbie has been an active member of the bleeding disorder community for over 25 years. She served as executive director of the Lone Star Chapter of NHF, was a co-chair of an NHF Annual Meeting, received a Ryan White Award for Advocacy Excellence, and has presented on mental health issues to chapter and national organizations. In 2018, Debbie founded “Mental Health Matters Too” as a way for helping community members who struggle with mental health challenges.

She has many podcasts and interviews available on line, listed below, that can offer insights into what people with bleeding disorders must endure, besides the pain of bleeds and infusions.

Thanks to Debbie for her dedications, as a mother and professional and community member!

To contact Debbie: www.mentalhealthmatterstoo.com or debbie@mhmtoo.com, (832) 689-9434

https://www.linkedin.com/in/debbie-de-la-riva-b99437245

https://www.facebook.com/mhmtoo

https://www.bloodstreammedia.com/expert-episodes/ep-17

https://www.instagram.com/p/CxiQVkqsXtx

Suicide Prevention Hotline: 1-800-273-TALK (8255) https://suicidepreventionlifeline.org/

Honoring a Special Mother

Laurie Kelley May 12, 2024

Mother’s Day… a special day for mothers of children with chronic disorders, like hemophilia. The sacrifices and suffering they endure creates women of strength and compassion, and they deserve to be celebrated.

A perfect book to read this week is Journey, by Robert K. and Suzanne Massie, first published in 1973. The intimate story of a young couple facing the diagnosis of hemophilia in their infant son, Journey has become a classic in hemophilia. It is, arguably, the first book written about hemophilia. It slowly unveiled the suffering and disruption hemophilia causes, and what life with hemophilia was like before the advent of clotting factor. The story is written in alternating chapters by Robert and then Suzanne. They each have distinctive styles. Robert shares the history of hemophilia, the genetics, the science behind it and the treatment. He also delves into the blood banking industry, and the shocking policies and politics of blood. Suzanne shares the family’s story, day to day, and the exquisite pain a mother experiences while watching her son suffer through the night.

But these are not ordinary parents. Robert K. Massie is a Pulitzer Prize winning author, and having a son with hemophilia and being a writer at Newsweek, led him to research and eventually write Nicolas and Alexandra, the captivating masterpiece about the last Tsar of Russia, whose son also had hemophilia. It reads at once like a great historical novel, highlighting the tragic love story between the two royals, and postulates how hemophilia might have contributed to the downfall of the empire and the take-over by the Bolsheviks. Suzanne helped research and edit the book extensively, and in time, became an expert on Russian culture and history. The family gained notoriety when the book was published and then made into a Hollywood movie.

The story concludes when their son Bobby is 18. Later editions included an update: Bobby survived, contracted HIV and hepatitis C, attended Ivy Leagues colleges and became an Episcopalian minister. He also became a social activist (most notably against South Africa’s apartheid system) and a politician, running for Lieutenant Governor of Massachusetts, and later, the US Senate. He has dedicated his life to public service and has accomplished so much.

Suzanne, his mother, became an author in her own right, on Russia, and later became President Ronald Regan’s advisor on Russia during the Cold War! She could never have seen where her journey as a young mother of a child with hemophilia could have taken her.

As mothers of children with hemophilia, we know the limitations our sons can sometimes face. Reading Journey makes you appreciate what is possible, how much we as women can endure as mothers, and gives hope that despite the suffering, crippling, hospitalizations, pain and days or weeks lost from school or work, all things are possible. Suzanne is an extraordinary mother who raised an extraordinary son.

Bobby eventually was cured of hemophilia with a liver transplant, and is the father of three adult children. His father has passed away; Suzanne still lives on, in her 90s, in Maine. Journey is out of print and a lone copy on Amazon is prived at $100. I have one copy that I am happy to ship to anyone in my database in the US, for free. Email me at laurie@kelleycom.com

Mothers Focus on Mental Health: Meet BD SUMHAC

Laurie Kelley May 5, 2024

May is the month of Mother’s Day, and I want to highlight this week and next two very special mothers and their cause: mental health in those with bleeding disorders.

Those of us who had sons born in the late 1980s found that the community was focused intensely on the devastating impact of HIV. Children and young men who were infected were suffering and dying. When the blood supply was tested and cleaned; when ten thousand were gone; when the lawsuits settled… our community looked to making products safe. When that was accomplished, we looked at joint damage. When that was conquered and prophy became the norm, we had to deal with insurance issues—and still are.

What got overlooked among all the pressing issues? Mental health.

Any chronic disorder must be treated medically. But mental health is important as well.

This year, a mother from the New England area, Kate Bazinsky, announced a new program to address substance abuse in particular. New England has been hard hit with deaths from substance abuse in the general population. Pain and suffering from a chronic disorder like hemophilia, can lead to abuse as well. From Kate’s exciting email:

“The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) emerged from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied access to behavioral health facilities. Without access to the treatment he needed, he overdosed and died. His death shocked the bleeding disorder community, and exposed a critical equity gap in behavioral health access.

“In response, a team of passionate community members, representing both national and local bleeding disorder organizations, took action and BD SUMHAC was born. BD SUMHAC’s mission is to advocate for access to appropriate substance use disorder and mental health treatment facilities for all individuals with bleeding disorders, with a focus on inpatient and residential facilities. We provide resources, tools and advocacy for providers, people with bleeding disorders, and their loved ones.

“Join us in bridging gaps for the bleeding disorders community!

“Since day 1, the commitment and dedication of BD SUMHAC’s team members to breaking down barriers to behavioral health access has propelled the work forward at a remarkable rate. In its first two years, BD SUMHAC made presentations at more than fifty in-person and virtual events to raise awareness both inside and outside the bleeding disorders community. From its first meeting with ten people, BD SUMHAC has grown to over sixty team members from twenty-nine states united in mission and it’s making a difference.

“In addition to the lives that have been changed by this work, BD SUMHAC has made significant progress at the policy level. Visit the website to learn more about the impact we have had as a community!”

What a way to celebrate Mother’s Day by celebrating the achievement of this group in making a difference, for all sons, for all children, for all people with bleeding disorders and substance issues.

Congratulations to Kate and her team and happy Mother’s Day!

You can reach Kate at kbazinsky@bdsumhac.org

Hemophilia and Poetry

Laurie Kelley April 28, 2024

To finish up National Poetry Month, let’s consider two more poets with hemophilia.

by Richard J. Atwood

To me, poetry specializes in the efficient expression of emotions and descriptions. It condenses writing into a purer form. You might compare poetry to the fractionation and purification of blood plasma to get the purest factor proteins, but I guess that metaphor would be a stretch.

Though I’m not an expert, I admire well-written poetry. Take time to read the exceptional works by the following poets who happen to have hemophilia.

Read My Mind by Jerome Stephens

Kildanore Press, 1990

Jerome Stephens (1955–1993) was born in Ireland with mild factor VIII deficiency. As he grew up, he was careful to avoid physical injuries and unnecessary knocks, and became a strong and robust young man who enjoyed outdoor activities. Living in Dublin, Jerome married and had children. In 1982, he underwent an appendix operation and was treated with contaminated factor concentrate imported from America. He was diagnosed with AIDS in 1987.

Jerome was an artist who expressed himself through sculpture and poetry. But he is better known for speaking out publicly—the first to do so openly for a television camera—about how AIDS had ravaged his life and family. With encouragement from his hemophilia nurse, Jerome published Read My Mind, a collection of 52 poems that includes photographs of six wooden sculptures carved by the poet. He does not mention hemophilia. Instead, his poems emphasize his struggles, and how his love and religion, along with his family and friends, strengthened him to fight.

Jerome wanted to speak on behalf of all Irish people with hemophilia and AIDS. His poems still capture that desire. After he died, his daughter spoke on his behalf in 2000, giving emotional testimony at the Lindsay Tribunal, after which those infected with HIV or their families received a financial settlement.

4:56: Poems by Carlos Fuentes Lemus

Dalkey Archive Press, 2012

Carlos Fuentes Lemus (1973–1999) was born to a literary family: his father, Carlos Fuentes, was a Spanish-language Mexican novelist and ambassador to France; his mother, Silvia Lemus, was a journalist. Carlos was a Mexican citizen who grew up mostly in Princeton, New Jersey, with short stays in various American cities where his father taught.

Carlos was factor VIII deficient and was infected with HIV by 1985. Carlos was a bright student, but never finished high school. He immersed himself in literature (mainly English) and in music. His interest in pop culture and the arts led him to become a writer, poet, photographer, painter, and movie director.

Carlos wanted to publish his first book of poetry after E. Shaken Bumas solicited several of his poems for the Minnesota Review in 1999. Bumas helped to record over 50 of Carlos’s poems that were to be used as the soundtrack for Carlos’s unfinished movie Gallo de Pelea. Unfortunately, Carlos died before completing those projects. Instead, his poems were posthumously published in 4:56: Poems. Written in English with some Spanish words and syntax, the poems delve into imaginative interpretations of youthful experiences. There is no mention of hemophilia in these lively poems that seem almost experimental or unfinished. Carlos also collaborated with his father on the book Retratos en el Tiempo (1998), in which his father wrote profiles of famous people he knew and Carlos took their photographs.

Poetry is an international genre that appears in many forms. These two poets with hemophilia did not have to include their bleeding disorder in what they wrote, but having it possibly sparked their passion to write. Maybe you’d like to express yourself in a poem? Go ahead! Dream, compose, write.

This review originally appeared in the Parent Empowerment Newsletter, May 2016