Photo: Pazhayannur Murali, employee of First Trust
Eleven years ago, these were the words on a t-shirt that brought me to the Hemophilia Federation of America (HFA). HFA is a Washington DC-based national organization that serves the hemophilia community. HFA is an advocacy group that provides medical, health, fitness education, raises funds and collects material donations to assist the hemophilia community. The following year I attended HFA’s Annual Symposium in Louisville, KY, and was introduced to a new world that I didn't know existed.
I have hemophilia.
So, what is hemophilia and how did I get it? Hemophilia is a rare bleeding disorder caused by a defect in the gene for clotting proteins, aka, “Factor”. A factoid: You bleed too, but the Factor in your blood helps you clot. My blood does not clot. I treat with Fact
or, which I inject intravenously every other day to prevent bleeds. Until now. Several months ago I started on a new treatment which is a subcutaneous (under the skin) injection. Over the years, I have bled into my joints, damaging most of my joints, leading to significant mobility issues. As you can imagine, major injuries caused by car accidents or invasive surgeries are dangerous and could even be fatal. You may ask, if treatment is available to treat hemophilia, why do you have bleeds? Well, for half my life, when I was in India, I did not have adequate treatment. For a majority of the developing world, the treatment status remains the same today and patients do not have adequate treatment for hemophilia. I feel very blessed, very fortunate and indeed grateful for where I am today. I am thankful to my family and friends, the hemophilia community, organizations like HFA and the local hemophilia chapter, First Trust and you, my colleagues.
Back to the “Swagger” T-shirt. The shirt led me to the HFA Symposium where I started as an attendee and since then have had a few roles as a volunteer. I have conducted adult men’s “Blood Brothers” group discussions; written about my life experiences in a book from HFA; been a speaker, panelist, poster reviewer; and worked on educational scholarship applications submitted to HFA. In addition to volunteering, I have also raised funds through personal donations, family and friends and through fundraiser events. First Trust has donated to the local chapter’s fundraiser “Golf Outing” each year for 19 years. As an older adult and a local Indian-origin “veteran” in the community, my treatment center directs new Indian parents and patients to me. I counsel them on how to navigate available treatments, the insurance process and also on the management of symptoms. Here are a couple of examples: A child was diagnosed with hemophilia at 8 months of age, around Christmas, in 2017. The father was here on a work visa from India. The parents had never heard of hemophilia and were concerned about their child’s future. I offered support in the form of advice and educated the parents on the disorder. Women can have a bleeding disorder too. This is not commonly known. A parent from India reached me because their 12-year daughter appeared to show abnormal symptoms. I frequently spend weekends and use my network to support care of patients in India.
This entire journey has been very fulfilling, and I hope to take it well into my twilight years.
THE FOUNDATION IS PROUD TO ANNOUNCE THAT MURALI RECEIVED THE VOLUNTEER OF THE YEAR AWARD FROM THE HEMOPHILIA FEDERATION OF AMERICA AT ITS ANNUAL MEETING EARLIER THIS YEAR. CONGRATULATIONS, MURALI, FOR SHOWING HOW MUCH ONE PERSON CAN DO TO TRANSFORM THE LIVES OF OTHERS!
