I was in Australia May 8-15, attending the World Federation of Hemophilia Congress. I had the pleasure of meeting a young man named Aung, from the Asian country Myanmar, formerly known as Burma. Aung had written to me months ago requesting sponsorship to the event, plane tickets that cost about $2,000. I am asked frequently for assistance and need to bank my money on people and programs I think will give a return–not to me personally, but to the cause of hemophilia. Myanmar is not a member organization of the WFH and therefore not eligible for funding to the Congresses. Kind of a Catch 22–the countries that need to be there can’t be there unless they have a hemophilia organization. These countries can’t get help forming a society, because they don’t have a society!
But one of my specialties is trying to get organizations formed in countries where none exist in the hopes that one day they will be accredited by WFH. It’s a great partnership which sometimes works! In this case, something about Aung struck me. A young man in a rather isolated country, who hasn’t walked in 7 years, in a wheelchair, willing to for the first time fly to another country, all for hemophilia and his people. That’s courage. He impressed me so much we helped fund him; please read his thoughtful and beautiful essay below and prepare to be impressed. And to realize how lucky we are in developed countries. We live in two worlds—the haves and have-nots, and the have-nots are only asking for the know-how to learn to stand on their own—literally and figuratively.
At the Yangon airport
My mother’s worries perhaps foresaw
the difficulties ahead. It’s not an easy task for me to deal with the airline
staff who told I am not allowed to travel on the flight because I have no
companion to look after me – because I am disabled. However I had a hard time
with my anger management in my teenage years especially on discriminations
against haemophilia and disability, I showed great demeanor in engaging the
conversation with the staff of the airline. They finally said they would make a
call the captain if he allowed me to be on the plane. It was a huge
disappointment I have ever had on the last minutes before the flight on the
airport. But this time I managed as my best to stay cool and wait for the
response, which was positive.
Meeting with Fred and Maria for the first time
Just as I have come out of the
airport main building, I found Fred Wensing and his wife, Maria. It’d be funny to say
but I had never seen his photo before and had no idea how to find him. Luckily,
he found me instead. The wheelchair at least made it easy for him to spot me in
the crowd.
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| Aung with Fred Wensing of Australia |
He and his wife took me to the
hotel where I was staying during the Congress days. This is my first trip
outside of my country and I have to say everything I perceived in Melbourne is
total opposite of what my country has in a positive way. There’s no
disabled-friendly sidewalk in Yangon, let alone the other parts of the country.
There’s proper treatment for people with haemophilia except blood products
which, according to my experience of catching malaria, are really risky. The
main difference between Australia and Myanmar is economic conditions, no doubt.
But the attitudes of the people here, especially the attitudes on the
disability are what I would call really civilized. Whenever I go in Melbourne,
I was never welcomed by the quizzical look saying “Why this guy in
wheelchair is here?” Attitudes
are not about material power or economic prosperity of a country. It’s about
education and nature, I believe. Even if so, there will be a lot of decades
before I will be seen as a person, not as a person in wheelchair.
First Day at the Congress
The exciting Congress days were
ahead. I was not able to sleep until 3 am on my first day of staying at
Travelodge. My head was flooded by the seemingly unstoppable thoughts of what I
would do and who I would meet in the Congress. It was 1:30 pm when I woke up. I
ran, of course in the motorized wheelchair, to a food shop nearby and had my
brunch. The shop sold Indian food and I found for the first time that Myanmar
is a cousin of India when it comes to cooking dishes. Their curries greeted my
taste buds as old buddies do to each other.
It was the first day of the
Congress and I planned to go to the Congress only for the opening ceremony. Fred
appeared at the lobby at 5 pm. With Aboriginal music and dance, the Congress
was wonderful. I met some people who have haemophilia including an elderly
person, who has pseudo tumor from haemophilia, a teenager, whose legs becomes
paralyzed after being injected painkillers through his spine, a severe
haemophilac from Tasamania who has inhibitors and joints with bleeds. I met
with some other people but the image of these three people left on my mind.
Back in my country, I always had this feeling of being alone before. I found no
one who is put into wheelchair by haemophilia and related causes.
Second Day at the Congress
Second day was probably the biggest
day of my life and the opening of my adventures. I went to the Congress alone
in the middle of the walking crowd who were going to all the directions. I can
enjoy the view of the Yarra River along the way to Melbourne Convention Center
while enjoying the freedom given by the wheelchair-friendly environment. I went
to the session, Management of Hemophilia with Little or No Factor. I had a conversation
with one of the speakers, Dr. Daniel Hart from the U.K, on my health problems
with blood products. According to him, some form of antibody might have
developed in my body due to the prolonged contact with FFP or cryoprecipitate
whenever I have bleeding. These antibodies make the treatment with blood
products less effective and my immune system is prone to fever and cold when I
have blood products as a result. It makes sense of the problems I am facing
when I inject blood products.
Appointment with a haemophilia specialist
I had an appointment with the
doctor after the session. Although I am seeing haematologists often in my
country, they don’t seem to be able to give me a solution to cure the bleeding
episodes of my knees, which turned me into a wheelchair user when I was 14. My
intention to see the doctor at the treatment room of the Congress is to consult
with him about my knees. The doctor told me it would take approximately $100,000 to have knee replacement operation to be able to walk. It might be a
ray of hope although I do not have any financial strength for such expensive
operation.
The doctor also recommended me to
see a physiotherapist in the treatment room. I have never thought physiotherapy
played a role in giving treatment to people with haemophilia before. The
physiotherapist advised me to have some basic exercises in the water. The very
important thing, she said, is to do the exercise slowly and to the limit
my joints will not bleed. It will be a little bit difficult for me since I have
to practice on my own. But I will have to try some of easy exercise. My muscles
have suffered atrophy over the period of 7 years I haven’t been able to walk. Hopefully,
regular exercise and diet will make the muscles and joints of my legs fit for
some movement.
Wheelchair Talk
I saw the man from Tasmania again
and we headed to a restaurant for our lunch together. He is 33 years now and he
is in wheelchair because of his damaged joints. Inhibitors in his body made it
difficult for him to undergo a joint replacement therapy. On the way to the restaurant
and at the restaurant, we were engaged in the conversation ranging from
relationship and romance to our favorite music. He said he has been going out
with a female friend recently but he doesn’t want it to evolve into a
relationship. “I don’t want her to babysit me, you know.” I could
give him nothing but an emphatic nod. I know what it feels like to be in
wheelchair and to have romance at the same time. Anyone who has been in
wheelchair for seven years will know it too.
We continued to talk about our lives
and at one point he asked me if my government gives me a disability pension. It
is a new word to me because our country does not have any social welfare
service offering to its citizens. Luckily, I have earned money for my personal
expenses from freelance translation and writing this year. I will have to thank
to my parents for keeping me at the university until I graduated. I departed
him for the next sessions of the Congress after I finished my meal.
I would not forget the moments of struggles with
the manual wheelchair on the way back to the Melbourne Convention Center which
was a couple of blocks away from the bar. I was going back to the Center alone
and the tense feeling is running along my arms while I was pushing the
wheelchair myself. I blamed myself for not noticing the steep ground towards
the Convention Center. On the way up, I felt as if my arms were going to
explode from the cries of muscles. But I felt the need to prove myself that I
am independent and I am capable of going to where I want. Of the things that I
have built, self-respect is a real ingredient of my life. I possibly cannot
survive all the physical pain from haemophilia and the chronic depression
without the sense of self-worth to my own existence and capability shaped by
this existence.
But it was not all my effort that took me to the
destination back. I was stuck at some places along the way and I would not get
back to my destination successfully without the support of the nice people
among the pedestrians.
Experience Sharing
There was one interesting session waiting for me
at the Congress. There were many speakers sharing their experiences such as a
doctor, a community leader and a person with haemophilia under the main topic,
In Our Backyards: Eliminating the Gap in Care Between Developed and Developing
Worlds. As someone who comes from a country with 2 percent of the budget into
healthcare sector, I have concerns for the people with haemophilia in Myanmar.
We have to pay for all the expenses of the treatment and it is extremely
difficult even for the middle-class people like my parents. There will be much
more people in rural area who are not diagnosed with haemophilia and who passed
away because of haemophilia. Personally, I heard the sad stories of the people
with haemophilia who passed away for the inadequate treatment. After I managed
to land the mic calmly in my hands, I raised the question to the speaker on the
difficulty we faced in forming the organization from the start with no data for
haemophilia and related bleeding disorders as well as the hospital with
expensive blood products and no factor products. I caught curious eyes from the
audiences while I was talking about Myanmar on the mic. In the rest of that
day, people came and asked me about the conditions in Myanmar. I cannot bring
better treatment, better living conditions and better lives to the people with
haemophilia in Myanmar myself alone. But I can spread all the information to
the global community and in this way, I might be able to find somebody who is
willing to work together with us to find a solution for approximately thousands
of people with haemophilia in Myanmar.
Learning things with open eyes, Meeting
people with open heart
I love learning, one of the things
that give you a reason to live in the world. The very first word of English I
learned obviously is “Haemophilia”. When I had access to the Internet
four years ago, I typed the same word in Google search box. I still want to
learn more about the bleeding disorder with which I will be living until my
last breath. Some of the sessions of the third day are interesting to me
although I may not be able to apply the knowledge from them to me or to my
friends in Yangon since they target mostly to the people in the developed
world. But I acquired medical knowledge such as what happened when blood is in
joints, and how to manage haemophilia with no factor products. There is hopeful
news such as the half life of the new concentrate products become longer, which
means the treatment will be cheaper with less amount of concentrate used. Maybe
prophylaxis treatment will be available to us in the coming decades.
I had a fantastic meeting with the
board members of the Haemophilia Foundation ACT on the third day of the
Congress. Although we live in different lands and cultures, we share a common
identity – haemophilia. It was never difficult to talk with the people
throughout the Congress. Board members of HFACT are interested in the
conditions of my country and me. I received great advices from them in running
a haemophilia organization. Their organization was formed 30 years ago and they
have been making progress with the care and treatment of haemophilia during
these years. But luckily, as Fred put it, we will not have to wait for 30 years
because science and technology are waiting for us.
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| Aung with Laurie Kelley |
I had a meeting with the lady from
the US, Laurie Kelley, who sponsored my air tickets. Project SHARE, organized
by Laurie and her team, has a positive impact on the haemophilia communities in
developing countries. I had talked with her on the possibility of her visit to
Myanmar. She said she might visit Yangon during her trip to South East Asia in
September. I hope to be able to work with Project SHARE and Save One Life
organized by Laurie for the sake of people with haemophilia in Myanmar in the
future.
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| Aung with Alain Weill, president of WFH |
I also had a conversation with the
president of WFH, Alain Weill, at the social event, Taste of Australia. He is a
good listener. He promised me that he would make sure the people in Myanmar can
have the treatment of factor products donated by WFH after the membership
application of Myanmar Haemophilia Patient Association is accepted by WFH. My
country, Myanmar, has been out of the map of the global haemophilia community
until now. I am probably the first person with haemophilia from Myanmar that
has been to a WFH congress. It is very important for all the people with
haemophilia in my country to have a representative in the Congress.
I also found the people from the
neighboring countries of Myanmar during the Congress days from Malaysia,
Indonesia and Cambodia. We also showed interest in forming a haemophilia
society for ASEAN. We would be able to lobby the ASEAN governments to improve
the care and treatment of haemophilia as one voice. I will keep in touch and
work with these people to form an ASEAN Haemophilia Association in a few years.
Goodbye, Melbourne
The Farewell Dinner also gave me a
perfect condition to make friends with the leaders from haemophilia communities
throughout the world. I talked with a president of the Vietnam Haemophilia
Association –another contact from ASEAN, young people from Australia and New
Zealand, and the doctors and nurses specializing in haemophilia.
Before I came back, I took a tour
around the city, Melbourne, in wheelchair. The streets were teeming with people
of different sorts. The shops were full of souvenirs. There were street
musicians entertaining the pedestrians. Even the city was dancing along the
tunes of the street musicians.
Having haemophilia and living in an
isolated country, I always have the feeling of ‘only me’. This is the first
time in my life I have seen so many people who have haemophilia at one single
place. Their happiness and motivation diffused to me. Along with other gifts
from Fred, Maria and their son, Damian, Melbourne gave me another gift – courage.
A courage to live with haemophilia
and be a community leader for the people with haemophilia in Myanmar is
probably the most important gift I have received from the Congress in Melbourne.
Elizabeth Stoltz, Senior Manager, Healthcare Economics & Reimbursement at Baxter Heathcare, presented an overview of the Affordable Care Act, including the many benefits and things to watch out for. It’s 2014, and about 8 million Americans have enrolled in the Marketplace—the on-line place to shop and compare insurance plans. Remember, it’s mandatory now that every American have health insurance or face a penalty.
Next stop? Houston in August!
