Ambassador for bleeding disorders

Excerpted with permission from an on-line article by Jojo G. Silvestre

World Hemophilia Day [April 17] is an international day of observance of which not many people seem to be aware. I am one person who may have a better understanding of bleeding disorders, a unique yet quietly widespread human malady only because my dear friend, Andrea Hernandez Trinidad, president of Hemophillia Advocates-Philippines, internationally-recognized as the face of hemophilia in the Philippines.

I met Andrea in the early years of the new millennium. A former newspaperwoman whose stories appeared on page one of a top daily, she shifted to public relations and, not unexpectedly, was very warm and friendly. It turned out it was not for convenience and business purposes that she had a ready smile. This was one lady, I soon realized, who was sincere in her dealings with others and whose friendliness is not dictated by the so-called exigencies of her profession.

Andrea, from day one of our friendship, had been one socially-confident, articulate and smart gal who dressed up properly (her style could be powerful at one time, sporty the next, or glamorous when the occasion called for it), laughed with gusto and listened attentively. Ours has been a two-way traffic, although I must say I’ve been more on the receiving end (ha ha ha) because, well, she has so much to give and I just don’t mean the “pasalubong” (gifts from travels) that she showers me with whether she needs me to edit something or not.

Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.

Although this may be late for World Hemophilia Day itself, I am focusing on her and her special cause — the promotion of awareness of bleeding disorders so that those who suffer from them would be given suitable and timely support which can be best institutionalized through legislation.

According to the website of the World Federation of Hemophilia (WFH), the organization, this year, “is focusing on reaching out and identifying new members of the bleeding disorders community. The WHD 2019 campaign will feature examples of WFH outreach initiatives such as organizing regional workshops, raising awareness of bleeding through media coverage or training health professionals and collecting data. It will combine these examples with submissions from our community about outreach efforts in their own regions or ideas about what would be helpful for future initiatives.”

Andrea comes from a family of public servants in the Visayas. Her maternal great grandfather, Jose Lopez-Vito, was a Supreme Court Justice. On the other hand, her paternal great grandfather, Vicente Vergara, was the first Mayor of Guihulngan, a locality in central Negros.

Her own father, Jesus Trinidad, was a long-term councilor and currently, two of her siblings and few cousins hold different positions in government.

Andrea and her five siblings were practically raised by their mother, Sofia, single-handedly, because their father was a martial law detainee in the 1970s and had to leave his family to work elsewhere after his incarceration.

Andrea remembers seeing her mom having bad monthly periods. Many times she would be confined to bed. She recalls, “In 1988, her bleeding became so bad that doctors wanted to run a biopsy on the lump on her uterus. She didn’t survive the supposed simple operation.

“My mother literally bled to death while undergoing biopsy operation simply because the condition was still unknown in the Philippines at that time,” recalls Andrea.

If it was devastating to the whole family, Andrea would later find out that she had inherited the disease. No wonder that as a teenager, she had a bleeding disorder.

She also experienced multiple bleeds every time she was pregnant, so all her three children were born prematurely. But it was not until her youngest child, Star, was born that she finally suspected that a bleeding disorder runs in her family.

Next week, Part 2: A Star is Born!

From: https://tribune.net.ph/index.php/2019/04/30/ambassador-for-bleeding-disorders/

Speak Out, Create Change!

Kenyatta National Hospital

about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

take aways from Dr. Kibet:

Kenyans we have every right to be provided for by things that affect us with
must take charge of our own destiny.
will make us strong.
with one voice!
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.

is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

HemaBlog Archives