Stick-To-It-iveness! Improving Hemophilia Care in the Caribbean

Ray Greenidge and Erica Worrell of the Barbados (in red) with
Laurie Kelley and Salome Mekhuzla (WFH)
No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.  —English poet John Donne
I stepped off the plane in Kingston, Jamaica
on Thursday evening and the sultry, warm air enveloped me like a thick blanket.
This tropical island has great music, savory food, friendly people, world-class
resorts, a raging drug problem… and hemophilia. I was here this past weekend to
speak at the first-ever conference for the English-speaking countries of the
Caribbean. The Jamaica Haemophilia Committee hosted this landmark World
Federation of Hemophilia conference.
Luisa Durante, WFH
I’ve been to Jamaica twice before to help the
patients organize, and numerous times over the past 20 years to a few other English-speaking
countries here, including Barbados, Bahamas, and St. Vincent and the
Grenadines. All were represented here, at long last.
The emerging theme of the conference became isolation, and how
to break it. The poetry of John Donne expresses this so beautifully: so many
people with hemophilia feel isolated, as if they are on an island, cut off from
the world. Indeed, these people really are on islands! Our challenge is to
unite patients and families with one another in their own countries, and then link and connect country with other countries, to learn from one another and to
support each other. To make a hemophilia continent, and to reduce isolation.
Dr. Jackie Bird, St. Lucia
Topics of the two day conference included:
clinical management of hemophilia, outreach to community members, genetics,
hemophilia in the Caribbean, WFH programs, comprehensive care, the role of
nursing, physiotherapy, and patient involvement.
Who attended? Erica Worrell from Barbados, mother of
a child with hemophilia, who just started a new society there in April and
already held a successful walk to raise awareness; Brian and Ritchie Bardalez
of Belize, young men who I have known since they were children, as I visited
Belize twice back in the early 2000s (they are now taking a leadership role);
Issa from Trinidad and Tobago, a patient and fiery orator, all my colleagues
and friends from Jamaica (Denton, Alex, Kirt, Berverly, Kerry-Ann, Milton,
Tamaicka, Sharon, Gricell, and the medical staff of UWI), Laurence Bakhsh, a brave
young man from Guyana who we have helped for years with factor donations—first
time meeting him!

 
Bardalez brothers (Belize) with Valentino (Suriname),
Dr. Eric (Belize) and Laurence Bahkesh (Guyana)
The challenges are vast: Erica shared how
there is no national registry of patients in Barbados, and how difficult it is
to get factor. While the country buys some—a miracle in itself—you must get a
prescription (wait time long), then go the pharmacy (wait time even longer).
You must pay for all ancillaries, right down to butterfly needles, which often
are not even available! And tourniquets? Forget it. (We promised to ship her
some ASAP.) Ritchie pointed out that Belize has closer ties with the Caribbean
than with Central America, where he is located. There are only 16 known
patients in Belize, and the terrain is the opposite of flat Barbados; it is
mountainous with poor roads. A plane—“puddle jumpers”—is the safest way to
travel and distribute factor. 56% of the patients do home therapy, which spares
them from expensive travel to clinics. There’s no hematologist—anywhere.
Patient Ray Greenidge, vp, and president Erica Worrell,
Barbados Haemophilia Association and Charity
There’s also no hematologist in St. Lucia,
reported Dr. Jackie Bird, a 58-year-old dynamo who seems to have single-handedly
taken on care for all people with hemophilia on this volcanic island. Poverty
is 28%, and there are only 6 known patients—all with factor IX deficiency! Factor is not available and never has been.
That made me sit up.  Could we be the
first to ship factor IX concentrate to St. Lucia? Jackie’s knees buckled, as she made a prayer
sign with her hands, smiled and shouted, “Yes, thank you!” The room exploded in applause. This is the magic of
these meetings: putting people together, those with and without, sharing
honestly, and finding solutions. Yeah for us!
Laurie Kelley with Laurence Bakhsh (Guyana)
Laurence, a 33-year-old from Guyana, just
founded a hemophilia society in 2015 and is struggling. After all, he has
limited mobility, limited funding (he cannot work), and there are only 5 known
people with hemophilia, including his brother and cousin. Guyana’s population
of 755,000 means there are about 75 people with hemophilia. He has his work cut
out for him. But with his natural charm and humility, he quickly became a
favorite of all, and with his new network of colleagues, is bound to make
improvements soon. “Strive to stay alive” is the organization’s tagline.
The Bahamas was represented by Florence Roker,
mother of 21-year-old Chavez, who I met years ago. She has now stepped forward
to grab the reins of the floundering national organization. She broke into
tears describing how Chavez has suffered: “You physically feel their pain,” she
sobbed. Now, she said, regaining her composure, there are other children who
suffer and who need our help. You have to find the silver lining behind the
clouds. “This is a passion for me,” she concluded. “I’m motivated to get the organization
to where it should be.”
Agent of change: Florence Roker of the Bahamas
An empowering and passionate speech was given
by Issa, chair of the Society for Inherited and Severe Blood Disorders Trinidad
and Tobago, an association for those with hemophilia, sickle cell and
thalassemia. This is a brilliant strategy, to link up the three blood disorders
to gain strength and have a stronger voice. And oh boy, does Issa have a strong
voice! Motivating us and making us laugh, he stirred the audience emotionally
with obvious leadership skills. T&T has been a WFH national member
organization for 25 years, making it the oldest organization for hemophilia in
the Caribbean. Issa declared that in the 1980s, West Indies cricket dominated the
world. “Dominated!” he shouted. “Dominated! It happened when we united as one!
We conquered the world!’ The audience laughed and applauded. Comparing this to
diseases and disorders, T&T united as well. But unlike the West Indies
cricket team, which had its glory days in the 1980s, “we are still a force to
be reckoned with!” Issa declared.
But the most quoted person these two days was
Jamaican hemophilia patient Tevon Brown, who stressed how isolated he felt
growing up, as if he were the only person with hemophilia. He suffered terribly
with pain, which felt like an “electric lead to my heart.” Strong role models
and good teachers helped him. And he stressed now that we must unite and bring
those who are isolated together, including nations. “We must have stick-to-it-iveness!”
he announced.
Kisroy Forde addressing the audience
But the greatest joy for me was seeing
22-year-old Kishroy Forde, who I’ve known since he was six, attend. Kishroy
lives on Mayreau Island, remote in the Caribbean Sea, part of St. Vincent and
the Grenadines, accessible only by boat, with no health care on the island of
300 people. It’s surreal to visit, which I’ve done twice. We provide Kishroy
with factor when he needs it, and he knows how to self-infuse. We’ve also
helped him attend a tech school,  and
with the help of his sponsor, purchase a new fishing boat for his father. They
live in a rustic community; Mayreau has no towns and you can circumambulate the
island in less than an hour. And yet, it is a tropical haven.
This was the first time Kishroy has met
others with hemophilia and taken a plane. It was amazing to see him conversing
with other guys his age who have hemophilia. He even got up to share his story!
I must thank the World Federation of Hemophilia
for organizing this conference, funding it, and inviting me, which allowed me
to invite so many of the people I’ve met over the past 20 years. Kudos to Luisa
Durante, regional manager of the WFH for Latin America, who is as hard working
as she is fun as she is beloved by the people she serves. She and her team (Salome
and Felipe) provided a magical two days. The WFH does great work, and we are
proud to support them and volunteer when possible. It takes stick-to-it-iveness
to make long term changes in hemophilia care, and this is how it happens.
Unity, hard work, passion.
With Kishroy and brother Kishron, 2001
Laurie Kelley with Kishroy then
Laurie Kelley with Kishroy now

Another Graduation, Another World

Kishroy Forde
Last week we posted about Rose Bender, a young lady with hemophilia (rare in itself!) who was accepted to Ivy League schools and who has so far lead a rich and rewarding life, supported by family, filled with promise.
Kishroy at work
Another young person who has graduated is Kishroy Forde, about the same age as Rose but from an entirely different world. He lives on Mayreau Island, in the middle of the Caribbean Sea, accessible only by boat. From Boston or New York? You’d have to take three planes and a chartered boat to get to his home. 
Kishroy (far left) and his classmates
Kishroy could not have grown up in a more different world than Rose. Isolated on this remote island, which only has had electricity for the past 10 years, living in a house without a bathroom, no immediate access to medical care and certainly no factor. Kishroy’s father is a simple fisherman, earning about $40 a month. His little brother with hemophilia, Kishron, died at age 11 from a GI bled. His mother soon after abandoned the family to go to a nearby island and start another family.
Kishroy struggled to stay in school due to his bleeds and lack of factor. He has to take a boat to school daily! Project SHARE shipped him factor from time to time, to keep him alive, and healthy enough to finish school. Thank God for FedEx!
I visited Kishroy on Mayreau Island last February, after not seeing him since he was 6. I was shocked to see, at the docks when I landed, a 140 lb, 6 foot 2 inch beanpole of a young man greet me. Still soft-spoken and gentle, harboring no anger or bitterness at his lot in life, he embraced me and thanked me for the support from our company.
And he surprised me. On an island of only 300 people, most of whom live and die there, he told me he wanted to go to technical school and get an electrical engineering degree. I promise to foot the bill if he could register and study hard. 
He did. Without family support, with few options in life, with hemophilia bleeds hobbling him (there are no wheelchairs or crutches even on hte island) he did it. I am as proud of Kishroy as I am of Rose. Two young people from different worlds, who both value education and are determined to be independent, contributing members of their very different societies, despite the same bleeding disorder.
Fire is the test of gold, adversity of strong men. Seneca
(Thanks to John Parler for sponsoring Kishroy through Save One Life!)

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Island Paradise or Prison?

After
escaping a major snow storm that grounded 50% of flights at Logan, I boarded JetBlue
to New York on Thursday, then Bridgetown, Barbados, and then my real destination, St.
Vincent and the Grenadines (SVG), a nation composed of five islands. I was last here
in 2001—13 long years ago—to meet the Fordes, a family with hemophilia on the remote island of Mayreau. It’s
not easy to get to. After a one night stop over in Kingstown, the capital of SVG, and a meeting with the
lovely Dr. Bhattarai Datta, a pediatrician who wants to start a hemophilia organization,
I had a short flight, over to Union Island in a private plane, owned and 

Laurie Kelley with Dr. Bhattari Datta

piloted by Martin Jennett,
a suntanned, charming and wry Scotsman who has lived here since the 1970s. He
showed up in shorts and flip-flops, and said climb in! His Grumman American
Tiger—which he says is “just my car”— is compact, cute, nimble and does the
job, just like its owner. His gorgeous clipper Scaramouche was used in the Pirates of the Caribbean!


.

We were airborne
at once and pierced the clouds. They billowed on my right, the sun heating
them. On my left, islands and turquoise waters. Mayreau eventually appeared; we
have to technically fly over it to get to Union Island, where there is a runway.
From the air, Mayreau was splayed like a green starfish floating on the sea.
Seeing Kishroy for the first time in 13 years!

Splayed like a green starfish on the sea: Mayreau

At Union Island,
I met Glenroy, the captain of a boat which transfers the high school kids on Mayreau to Union every day! He introduced me on the dock to Nancy and husband Lorne, a
couple from Nova Scotia, who were also heading to Mayreau. And on the docks is where I met up with Kishroy Forde, who I
last saw in 2001, when he was only 6! He shyly walked around me, unsure if it
was me, and said hi, and I recognized him immediately. I gave him a hug, big
smile and we chatted. He is 6’2” now, a far cry from the skinny little boy that I put on my knee then.
The ride over
was nice, my hair was a disastrous mess, and I mostly listened to Nancy, who
shared how she and Lorne had bought a house a few years ago as a winter retreat
here, but who have been coming here for 20 years.
At Mayreau, Kishroy’s
dad Aldolphus met us at the dock. Dennis, owner of Dennis’s Hideaway, where I
would be staying, had sent a driver to pick me up in the strangest truck ever.
It looked like it was pieced together bit by bit from scrap metal from anything
handy. It was amazing that it could run. There was no dash, just open wires; no
steering column cover. Everything exposed and jerry rigged haphazardly. The
door would shut only with a lot of outside assistance. You do whatever you must to keep going here.
Dennis’s
Hideaway was written up recently in Outside Magazine as a place to try. It’s where I
stayed 13 years ago and it’s pretty much the same. A bit rustic, but from
my room, a great view of Mayreau Bay, and Kishroy’s house. It was nice to see
Dennis again. He’s a bit grizzled, but still flashes a broad smile. I invited
Nancy and Lorne, Kishroy and Aldolphus to dinner at Dennis’s that evening. We gathered at 7 pm first by the round, hardwood bar, where Dennis joined
us. He told us stories about various visitors, and how one woman came back to stay a week, and asked if he recognized her.
He said no. She said last time she had been there he had proposed marriage to
her! We laughed. I said, “So you probably don’t remember me from 2001?” He
paused and asked, “Did I propose to you too?” We all laughed again.
We called it a
night at 9 pm; the mosquitoes were biting and their bites sting with impunity.
They call these mosquitoes “noseeims,” as in “No see them.” Really.
Saturday February 8, 2014
Kishroy with Adolphus
Kishroy showed
up at 8 am or so, and we took it slow that morning. First, to his house, to
unload gifts. He has an islander’s walk, shuffling and unhurried, saying hello
to everyone. We walked about 20 paces, took a left behind a little bar, and hiked the worn path, matted with leaves, lined with some trash but maintained
by goats tied to posts. Some mixed breed dogs pranced out to announce my
arrival, followed by pups. Once Kishroy put them at ease, they baptized me with
their tongues, tails wagging so hard their torsos were shaken from side to side.
The simple wood slat home
has deteriorated a bit, and most definitely lacks a woman’s touch—Kishroy’s
mother left the family years ago. There is an outhouse and a rain vat. Kishroy shows me his Spartan room, and given
that this may be his home for life, I vow to get him a bedspread and matching
curtains next time I come. His cousin Tevin is with him. We unload the gifts: a
Bible, pens, books (like Fantastic Voyage,
about scientists shrunken to travel through the blood stream), a waterproof
expedition watch for him and his father, and wallets. Neither had a wallet.
Kishroy was delighted. And even more with the factor that next was retrieved!
Spartan bedroom
Kishroy’s house
Kishroy is going
to get a passport so we can try to get him medical attention for his elbow,
which does not bend beyond 90°. I’m not sure what can be done, but we need to
at least find the answer and learn his options. But he needs to go to the
States for this.
Next we take a
walk. Behind his house are his uncle’s houses. Adolphus, his father, is one of
seven sons: Claude, Samuel, John, then Adolphus, Job, “Nomo” (not his real
name, but nicknamed such because his mother declared that after that baby there
would be “no mo’.”) and Alvin (apparently her plan failed!). It’s clear that Kishroy, despite the risk of
living on an island that just got electricity within the last 7 years, and is
accessible only by boat, with no medical care, is surrounded by a tight-knit
and plentiful family. In that way, he is richer than a lot of people I know.
One school house for all ages
Roman Catholic Church
We stroll up to
the schoolhouse, where about 70 children all sit in one room. And the Roman
Catholic Church, quite pretty and well-maintained, where almost everyone goes
to church. Then we hike around the perimeter of the island, admiring the sun sparkling on the sea, and the various shades of blue. We eventually end up at
Nancy and Lorne’s cottage, and they invite us in, despite all the yard work they
are in the midst of. A few minutes turns into 90, and we eat lunch and I listen
to how Nancy sat with various elder women on the island to capture their
stories for a book she authored. She gives me a copy, and one for John, Kishroy’s sponsor.
I can’t wait to read this. She has I think for the first time preserved a piece
of history of Mayreau.
Lorne and Nancy
After lunch we
head for the beach, and climb on the dock, where some young boys are fishing.
We need gas, and the guys load up the boat with empty containers. While we wait,
Kishroy opens up a bit. I ask about his father’s fishing; how often? Where?
Home made boat
“He goes away
sometimes for a day, sometimes for t’ree weeks,” he says simply. You miss him.
“Yes…” And adds softly and suddenly, “I miss by brother too.”
I was hoping we
could somehow speak about this, but island culture is very different than our
North American bare-all culture. Tragedies are not spoken about much. Kishroy’s
little brother Kishron died of a GI bleed quite a few years ago. I had noticed
his pictures that I took of him from 2001 set on the one piece of furniture in
the living room.
Chillin’ at Lorne and Nancy’s
“I know you do,”
I replied. “I miss him too. He was a good boy.” And talk turned to who was
Kishroy’s best friend now? “Antonio,” and Kishroy smiles. I would meet him
later that day.
Stunning Caribbean Sea

The boat was
ready, so we gingerly stepped in, balancing dock to rocking dugout; I started
doing the splits with one foot on the boat and one on the dock as the boat
suddenly drifted away. Thankfully Tevin grabs me and keeps me from plunging in!

A very fast
speedboat ride, crashing through the mild waves and dousing us with salty water,
to get to a neighboring island about 30 minutes away to get the cheapest gas
around: about $7 US a gallon! Everything on an island that must be imported is
expensive, and almost everything must be imported. We finally pull up; my hair
looks ghastly, my sunglasses are salty and coated but what a great ride!
Salt Whistle Bay, Mayreau
After we load up
with an amazing amount of gas (must have been 50 gallons or more), just sitting
in the boat at our feet we head out again. I realize we don’t have life
jackets, or a radio, or much of anything safety wise, and now have a boatload
of gasoline. Yikes.
We tour for the
next 90 minutes all around the islands and cays. We see in the distance the
small island where Pirates of the Caribbean was filmed. We see pretty green
turtles poke their heads out of the water, staring at us with dull eyes. The
water is a startling, pure turquoise, like a liquid gem. The sun beats down in
us, despite the breeze and wind, and I am soon sizzling red.
We head back and
in minutes are back at Mayreau Bay. I head up to Dennis’s to change. We later
meet up at Kishroy’s house. En route in the dark, we spy Nancy and Lorne on the
street and say our goodbyes and hugs. Maybe it’s the atmosphere, or being on
such a remote and sparsely populated place that makes you need to get along,
but you feel closer to people here. Nancy told me only last year for the first
time did the island finally get a policeman. A vet comes to the island once a
week (there is a problem with too many dogs); a nurse also comes once or twice.
If you get really sick at night, you must take a boat to get to Union, and the
facilities there are a bit scary. Martin simply says, “Get to Martinique if you
need medical attention.” And I am sure that’s not just a ploy to hire his
aircraft.
Kishroy 2014
Kishroy (L) and Kishron, 2001
So for Kishroy,
it’s a risk daily to live here. But tonight we celebrate. Unknown to me, Adolphus
awoke predawn and went fishing, and came home with two gorgeous lobsters. He’s
as good a cook as he is a fisherman. With fresh salad, rice, potatoes and
lobster, this is a meal fit for royalty. We sit outside on this wooden deck, in
the dark, very simple, but with so much elegance and respect. He is a man of
few words; but I know when I am being thanked. I also note that lobsters are
his main source of income; to give away two is a sacrifice. And I note further
that Adolphus, for all his lack of education, humility, and humble home, has
given me an entire lobster; Kishroy gets the tail of the second, where the
succulent meat is of course, leaving Adolphus the head and chest, where there
is virtually no meat. I am always struck by the true class some of the poorest
people exhibit, and which is so lacking in many of the well-to-do.
 
We pop open some
champagne and toast ourselves. And I split the lobster tail and share with
Adolphus. A grand meal, a way to say thanks for all those who sponsor Kishroy
(first the Castaldo family years ago, and now John Parler) and for those who
donate factor. We are all keeping him alive and well. In his slight, faint
voice, accented with the British lilt of the islands, he says, “T’anks for the
factor and the sponsorship.” Nothing more need be said. 

Some parts of Mayreau are poorer than others

We walk back in the
darkness, skirting frisky dogs and a random goat, listening to the blaring and
pounding of the karaoke bars nearby, stars above, ocean surf ever present, and
say good bye at the gate of Dennis’s Hideaway. What a difference 24 hours
makes. What a difference shared lives make. What a privilege to be here.

He’s got factor now!

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