Fiji: Never Give Up!

Saturday, February 17, was the first hemophilia workshop ever in Fiji!  We could not have done this without the dedicated help of Dr. Bijend Ram, director of Community Medicine & Public Health, Suva Bayview Medical, Randall Curtis (US), Dr. Julia Phillips, hematologist from New Zealand, and our local new leader, Kunaal Prasad, who worked so hard to pull everything together and bringing everyone together for the first time.
Dr. Julia examines Shahil
We had a great turnout. About 50 medical people showed up from all over the island of Viti Levu. I welcomed everyone with “Bula!”, introduced our speakers, including Dr. Ram and Kunaal. Dr. Julia presented “Haemophilia 101,” and even had a discussion about bleeds, when little Shahil showed off his bruises.

A buffet lunch was served (the food in Fiji is excellent), and our attendees were friendly and informal. The sun was scorching hot. Back inside our small, air-conditioned room, we continued. I gave my talk on Project SHARE, and then explained the WFH and NNHF. My main message was to leave hope with them. There is a worldwide community waiting to help Fiji but first FIji must organize, and help itself.

Dr. Ram welcomes everyone
Randy spoke about the necessity of a national registry, and then, funny and disarming, also gave a demonstration of an infusion! Everyone crowded to watch. Finally we concluded with a patient discussion, which was the best part of all.  It was the first time the families with hemophilia in Fiji had ever shared together their experiences, and feelings. First the young men spoke.
Niraj went first. We had just visited him in the CWM hospital in Suva, the capital, two days before. He shared his 10-day experience there, in which he had to find blood donors to replace the bags of FFP and cryo he used up. “It was hard to find a donor,” he said. Kunaal had really rescued him by bringing the factor we donated. After his shot of factor yesterday, he went home at last!
The families share for the first time
Then Deeptesh took the microphone. “My childhood was not fun. I didn’t do any sports; I was a spectator. I always got treated with cryo; and I had to supply the rare blood type group [to replenish what I used]. I had to find donors. Once, I used 50 units of cryo and had to find donors! I pleaded on the radio for donors. I used to say, ‘Why me?’ but now I realize there are those worse off. My school life? I quit form 6 and stayed home for one year, then returned. Maybe one day my life will be totally different.”
Deeptesh
Next, Sanjeev spoke. Cousin to Kunaal, he shared, “I was diagnosed at seven months.” Growing up was difficult. “For me, I had to be in the hospital sometimes two times a month for severe joint bleeding in the elbows and knees. I missed out on nine years of education. In 2010, I hurt my left knee, and couldn’t walk for three years. I had severe swelling in the left knee. I did exercises, and started walking again, and returned to school. It’s really important to never lose hope. There is always hope. I’m really glad we are getting this help for a better life. The pain is excruciating. There was a time when I thought everything was over for me—over. Don’t let hemophilia be a barrier to your education.”
Sanjeev
Then came the father of two year old Suhal. As he took the mic, he immediately choked up. With tears in his eyes, he shared: “My son was hit in the head and we took him to the hospital…” Now the father was crying; a very uncomfortable moment in this stoic community. “It was hard to believe he might be without us tomorrow… we only have one son! We are concerned about him. After one to two years, we took him to the hospital for two weeks at a time, sometimes. He missed school sometimes for one month. We were losing hope for him.” Now, Suhal’s mother started wiping her eyes. “We want a better life for him,” she wept. Kunaal told the parents there was a donor overseas. “If our foundation is created, the donor can help him get factor and an education!” Kunaal was fast becoming our beacon of hope to everyone.
Sanjeev added, “The problem we face at the hospital is that we are told to go home! They won’t listen or believe us. It’s hard to explain how painful that is. The factor being provided is really helpful and we are really grateful.”
Kunaal then shared his thoughts. “First, deformities and disabilities—there are a number of patients who have constricted joints. Mt right knee is deformed. I was on crutches for 10 years. It’s really painful. You cannot imagine…” All of us listened in rapt silence, perhaps feeling guilty for our good health while all these young, beautiful men spoke of unrelenting pain.

“Second, factor is a new thing,” he added. “I appeal to you doctors: if a hemophilia patient comes to you, don’t go with the APPT results. That doesn’t tell you if he has a bleed!” Imagine, the 23-year-old was lecturing the hematologists about diagnosing! I loved it. “The APPT has been ruining things! It dictates whether we need treatment. Put it aside. Focus on the pain level.”
Laurie Kelley with Dr. Lila
Lastly, he stressed that hemophilia patients were intelligent and could put their minds to anything. “I always wanted to be a doctor,” he confessed. “I need to get my high school done. Some of us are losing hope because we think we can never do things. But never give up. Age isn’t a barrier! Move forward, focus on your dreams. Lean on one another for support.”
Then the group addressed depression, a silent epidemic among them all. “Everyone has this in common,” expressed Kuunal.  “When your dream is falling apart, people get depressed. Some have tried to end their lives. I was depressed myself. Education means everything to me. I was suicidal for so long. I have hints to the medical students who treated me. I gave hints, but people are not open about how they feel in Fiji.”
Kunaal: Giver of hope
Kunaal’s mother started crying. “Our first son was diagnosed one month after he was born, in 1986,” she said, wiping her tears. She shared how difficult it was to get treatment. They had to travel back and forth to Lautoka, a 40 minute drive each way, which cost the family $50 each way; the father, Jack, only earns $70 a week!  “He had a tooth extracted and his nose was bleeding, too, and he died.”
She felt the doctors neglected him. Her pain was difficult to see. Kunaal eventually stood, and silently left the room, tears in his eyes, unable to bear to see his mother in so much pain. Kindly, Niraj went out with him to comfort him. 
The mother continued. “He was moving about in pain so much, the doctors tied him to the bed and left him. He passed away at 7 pm.” This may have been the first time she had ever shared this in public.
Our team! 
When they started taking Kunaal, their second son, to the doctors, the medical team took the parents more seriously. Once when Kunaal was receiving cryo, Jack told the doctors to wait in the room, as Kunaal might have a reaction. This was a bold move for Jack; most parents do what the doctor tell them, but the Prasad family found its voice. Sure enough, Kunaal had a reaction and needed medical attention. The family praised Dr. Naryaan, who happened to be in the audience, as a physician who truly listed to the family’s concerns.
The hospital expenses led the family to avoid going for treatments.
Kunaal stated that for the first time in two years he is walking, thanks to factor donated from Project SHARE. And he is a lot happier. He has plans to return to school, now that he has factor. And eventually get that medical degree.

Shahil loves his new books

All the sharing encouraged the other parents. Shahil’s mother recalled she always wanted a son. She prayed for a son. And then she had one. For the first few years there was no problem. Then he hit his head on a wall and his head swelled. They took him to Lautoka Hospital, where the tests said there was nothing wrong. When she told the doctor her nephew had hemophilia, then the doctor listened to her. She waited two years until they finally got the results that he had hemophilia. Shahil is 8 now, and doing very well.

By 4 pm we were done, and the workshop ended. We thanked everyone, Kunaal especially, for such an incredible day. Fiji’s first medical workshop!
It was an emotionally charged day. We changed into comfortable clothes and then went for a drive to Port Denerau for shopping and dinner. Randy, Julia, Kunaal and I browsed shops that had cannibal forks (for eating brains! Part of Fiji’s tribal past. I bought one) and then ate dinner by the sea, and had wonderful seafood. It was lovely; sun setting, yachts, fun conversation and that wonderful feeling that we did some good today, and everything happened well and according to plan. After dinner, we went into the Hard Rock Café, where I bought Kunaal a sharp looking Hard Rock Café shirt. We strolled back to the hotel, and went to bed early. Another big day tomorrow in Fiji—the start of a new national organization, the Fiji Haemophilia Foundation (which we successfully created!). But that’s a story for another time.

Farewell dinner by the sea

Moce Ni sa Moce, Fiji!! Thank you for all your gifts to us.

From Facebook to Fiji!

I can honestly say a cold sore led to the forming of the Fiji
Haemophilia Foundation. Yup. More on that in a minute.
Fiji… the very name conjures up sun-soaked beaches, palm trees,
turquoise waters, and friendly people. When I told people I was headed to Fiji,
some rolled their eyes, like Work is so
tough, isn’t it?
Well, it’s cyclone season, and we did have work to do. We’re
holding the first ever hemophilia workshop, and starting a national foundation
for hemophilia. Not much time for beaches!
My thanks to two people on Facebook—Kelley Lynn Gonzalez and Milena
Pirnat— who sent to me a young man with hemophilia, Kunaal Prasad, in need of
factor. We get many requests daily and try to help ship factor to all in need.
But when I learned Fiji had no hemophilia care, that they still used cryo and
fresh frozen plasma, and that Kunaal was a bright, articulate and eager to
learn young man, the pieces fell into place. No one from the world hemophilia community
had ever been to Fiji in an official capacity, until now.
Kunaal (and Fiji!) got his first shipment of factor from Project SHARE,
but the physicians were reluctant to infuse it. Kunaal, ever resourceful,
appealed to the interns, young budding physicians, who infused him, with me
coaching half a world away at 1 am. That’s not sustainable. So I invited Dr.
Julia Phillips, a hematologist from New Zealand, to accompany us to Fiji to teach
about hemophilia. Randall Curtis, a man with hemophilia and an international advocate (and a personal friend),
would also accompany us. He had visited Fiji just the year before, when Cyclone
Winston hit the islands.
Kunaal Prasad
This is where the cold sore comes in. Randy was vacationing with his
family, was stuck due to the cyclone, and ran out of cold sore medicine. The
one doctor he was able to see, Dr. Bijend Ram, prescribed him his medicine,
and then learned a lot about hemophilia from Randy that day. When they both realized
there was substandard care in Fiji, they both set about trying to set up a hemophilia
foundation. Dr. Ram made some progress but it stalled.
Until Kunaal contacted me. Setting up new foundations is what I do.
You need a committed doctor (check) and a patient leader. In Kunaal, I think we
found one.
Here’s part one of our trip.




Tuesday
February 13, 2018
Randy Curtis makes us all laugh as we get
coconuts en route to Suva
We’re catching the tail of a cyclone that hit another island in Fiji. It
was overcast and very windy, with sheets of intermittent rain all day. Kunaal
and his father pulled up in their car at 8:30 am to transfer me to the Nadi Bay
hotel, a quaint little hotel near the airport. His father Jack is a big guy,
over 6 feet, and Kunaal is taller than he looks on Facebook. After intense
Facebook correspondence and emailing for four months, we were delighted to finally meet! Kunaal came up
to my room while his father had to leave, so we chatted a long time and
I heard his life story, which is very sad. His older brother died at age 7 of a
nosebleed; Kunaal himself had a brain bleed, and was in a coma. Such an articulate,
handsome youth, age 23. I wince at the stark difference: his life
here and our lives in the US… and look at what this young man has accomplished!
He brought us three here: me, Randy, and Julia Phillips (a hematologist from
New Zealand), because we believe in him. He has leadership skills and a vision.
Life has been hard, but he is resilient.
It was a day to get acquainted (though I’ve known Randy about 20 years)
and to do errands. Hotel drop off, then off to lunch in Nadi, at “Victorious Apple
Restaurant,” featuring Chinese cuisine. (Nadi is pronounced “Nendi,” with a silent “n” as
we are told) Afterward, we drove a short distance to the Paper Power store to
get items for our workshop on Sunday. Julia had nowhere to park, so she drove
around, got lost and we had to wait for her in the searing sun, trying to reach her by cell.
Finally we took a taxi to where she was! 
She’s a good sport!
We drove back to the hotel, where Randy taught Kunaal how to infuse
himself. I do believe Kunaal became the first person in Fiji to self-infuse at that moment.  I had to prop my feet up on the wall for 30 minutes as they were
swelling terribly in the humidity. 
At 7 pm off to the “sign man”; it was a short drive but the visit was long.
The house on the outside appeared ok, a saltbox, but inside, it was a conglomeration
of rugs, chairs, baby things. The rugs were laid down, wall to wall, without
being cut or nailed. There was furniture, long since stained. Stuff was
everywhere, as this was his workplace and home. I admire the guy for eking out
a living here. And with this weather, everything is damp and dripping. His
mother appeared, an elegant, though poor, woman, wearing black, with a distant
look in her grey eyes. She shook our hands politely and her frail hand felt like the damp
paw of a kitten.
Chopping coconuts along road
Kunaal was tired and hurting; I could see it in his face. But we had
to wait a long time to check the sign (which was accessed through the grindingly slow internet).
I paid Sign Man $50 Fijian dollars (about $25) and stood up to announce
that we needed to get back. It was 8 pm and we were all tired. And we had to
take Kunaal home and that became an adventure!
Driving in the dark, about 15-20 minutes, through Nadi, then to the
outskirts of the town, we took a left and down a steep dirt road, with many
potholes from the rain, rocks, more potholes… we were swallowed up by high
grass bordering the dirt road. Then across a rushing river on a concrete,
narrow bridge, and a sharp right, onto railroad tracks! Kunaal said to just
stay on the tracks and we won’t get stuck in the mud. The mud was 6 inches deep
at least. If we got stuck… how would we get out? Only when the mud spat us out
onto dirt and rocks again did I breathe. We pulled into a small area where
there were a few small homes and three barking, yellow mutts. Don’t touch them,
Kunaal warned. We piled out and were warmly greeted by Kunaal’s family. His
mother is pretty! We hugged. His sister was there, her two little kids are
adorable. They all live together in a two room house. The mosquitoes were
relentless. It’s difficult to imagine Kunaal living in such an out-of-the-way
place, with a bleed, dealing with cyclones, mud, floods mosquitoes.

Click here to read about Wednesday’s visit to see the oldest person
with hemophilia in Fiji.
Thursday February 15, 2018  Trip
to Suva
Today we would go to the capital,
Suva, to meet with staff at the Colonial War Memorial hospital, and also the
Ministry of Health. The day started out sunny and hot. Julia, Randy and I met
in the lobby with Kunaal. Dr. Ram would meet us in Suva.
En route, we stopped along the sea,
which was bright and beautiful, and the others had coconut milk straight from a
roadside vendor. Randy’s a lot of fun as he just chats up a storm and jokes
with everyone! We took photos and then resumed, with me driving on the left,
for the first time!
Once we got near Suva, three hours
later, I relinquished driving to Julia, who, from New Zealand, always drives on
the left. Suva is small and quaint. We found a restaurant and met up with
Roshika Deo, a lawyer who has volunteered to help Kunaal. I instantly liked
her: age 35, single, dynamic, smart, articulate. She will prove to be
instrumental in all we do. We waited for Dr. Ram who eventually appeared, and
we all sat down to a hearty lunch. The food is fantastically great. My favorite
was Kokoda (kore-condaa), which is
fresh Mahi Mahi in lemon juice. We discussed our goals and plans and
relaxed.
Off to the Ministry of Health. It’s a
simple building, with easy access and like many, plastered with posters on
child health, immunizations, birth control, clean water and blood borne
diseases. We met Dr. Luisa Cikamatana, director of hospital services, who,
after introductions, asked simply, “What can we do for you?”
We wanted to be sure our first visit
was favorably memorable, so I replied, “Nothing. We don’t want anything. Just simply,
keep us on our radar. If we need help getting medicine from customs, help us. If
we need your approval, please give it.”  And I gave her a run down of what we were
trying to do. Basically, let us help Fiji for now, and don’t impeded our help.
We took photos and that was that!
Then off to the Colonial War Memorial
hospital. This is a government funded, teaching hospital, quite aged. Like many
hospitals in developing countries, the halls had plaster missing in huge
patches, and stained walls. There are 512 beds, but most of the care is free. We
met with Dr. Illisapeci Veneti, a pediatrician. She said she has nine children with hemophilia;
I immediately looked at Kunaal and said, “This is how you build your database
and registry. Ask if you can have them contact you (and later, after we left,
their emails confirmed this).”
Then the highlight of my day: we met Niraj, a 23 year old who was
admitted a week ago. His ankle was bleeding and he couldn’t walk. He had been
in so much pain, he looked older than his years. His bed was rumpled and sad, in the corner, surrounded by
yellow walls that were dirty and chipped. He showed me his hand: rigidly
gripped, like a Volkmann’s contracture due to nerve and muscle damage. I am
reminded each time I meet a patient, how lucky we all are in the US, how my heart breaks
for these guys, and how much work we all have to do.
We had brought factor, and so Dr. Julia used this as an opportunity to
do a demonstration about infusions. It was great.
She had the nurses gather, got permission from the head physician, and had the
local nurses themselves mix and administer the factor. Everyone was happy!
Kunaal spoke and length with Niraj and even after everyone was walking out the
door, I still wanted to talk to him and take photos, which I did. Kunaal and I
both agreed there was something special and heartfelt about Niraj. His
condition bothered us both a lot, and he himself was so grateful and humble.
It was getting late and we still had a three-hour drive back to Nadi. After
a while I offered to drive and Julia was only too happy to have me take over. It
was odd, trying to remember to use the blinker (on the right), the high beams
(on the left) and the shift (on the left). Dr. Ram was a bit nervous! He kept
reminding me, “Beams!”
The rain sometimes came down in sheets, making it hard to see. And
there were killer potholes, that appeared at the last moment, making huge
explosive sounds. Imagine having a flat in this monsoon-like weather!  I navigated the potholes, the roundabouts, the rain.
Then out in my peripheral vision, I saw something move across the
blackened street out of the pouring rain… looking like a crawling face hugger
from Alien. Later on, I saw the high beams bounce off of something by the side
of the road: a huge red crab! I realized that these were all land crabs coming out
on to the road in the rain.
We arrived safely, and it was back to our little motel for wine and
beer… and brainstorming.
Next week: A new era in Fiji!

The Oldest Person with Hemophilia in Fiji

Old generation and new: Kunaal and Albert
Rural Fiji: en route to town of Ba

February 14, 2018
A landmark day in Fiji: we met the oldest known person with hemophilia, Albert.
Our day started on this island nation of under a million with a Hemophilia 101 lecture for medical students by Dr. Julia Phillips of New Zealand at Lautoka Hospital, a government medical center. After this, Julia (well versed in driving on the left side of the road) drove on to the small town of Ba, another 40 minutes or so, to meet with
Mr. Albert Perumal, who at age 65, is oldest known person with
hemophilia in Fiji. He has hemophilia A. The drive took us into the rural
areas, where the main roads are well maintained, but the side roads degenerate to
dirt and rocks, as in many if not most developing countries.
Laurie Kelley, Randy Curtis, Albert Perumal, Kunaal Prasad
and Dr Julia Phillips
We passed roadside vendor shops–small, wooden home-made structures selling coconuts, bananas and vegetables. We passed simple homes made of concrete, no windows, edged with tall banana leaves and yards scattered with chickens. Life is simple here, and poor for many.
With me were Randy Curtis of the US, person with hemophilia, long time friend and international advocate; and Kunaal Prasad, a 23-year-old Fijian with hemophilia, who is fast becoming our patient leader in forming a new national hemophilia organization.
We drove up a bumpy dirt road to Albert’s house, a nice concrete structure with even a small
car port, in which everyone sat on couches, next to the car. After polite introductions, we settled down on the chairs and couch, and listened to Albert’s
story.
Three men with hemophilia: Randy, Albert, Kunaal
He started off with the important matters first: his family. He has three daughters, a son, and several grandchildren. He worked
for years as an office clerk, including 15 years as an accountant, back when
there were no computers, he noted. When computers were introduced to do
accounting, he lost his job, as he did not know how to operate them. He then
bought a vehicle, and became a taxi driver. He’s now retired, and has a pension
of $30 a month. $1 US a day… that is
all he has to live on.
Albert’s bedroom
And he has hemophilia to boot. He had six brothers, four of whom had
hemophilia, three of whom died. One was a twin brother of his. One brother died
at age 40 of kidney failure. Albert’s twin was the first to die, at age 15 from
a simple tooth extraction. The third brother was in a motor vehicle accident at
age 30 when he passed.
In a country that never has had factor, it is remarkable that Albert
has survived so long. He has hemophilia A but doesn’t know the severity. When
he is in severe pain, he goes to Lautoka Hospital, which will offer free care
as a government hospital. 
Albert’s nephew and his sisters live in Australia, and used to send
factor a lot. Now, they cannot, as there has been stricter customs laws. Albert
made us all cringe, but especially Kunaal, our new patient leader, when his
wife offered that when that donated factor expired, he threw it away. We all
politely informed him that it is fine and never, ever to throw away factor. We discussed
ways to share that factor with others, through the newly formed Fiji
Haemophilia Foundation.
Albert uses “slippery cabbage” to treat his bleeds
Albert credits his long life also to local herbs, which the indigenous people, the iTaukei, use for health. They use the mini-heart of the hibiscus, something they call “slippery cabbage.”
He has one grandson, 5 months old, who is not yet diagnosed. Time will
tell, as he may start bruising after toddling about or crawling.
Albert’s wife
brought out tea and biscuits, and we all sipped the red-hot tea and nibbled the
cookies, as a light rain fell. It was a refreshing visit, and an honor to meet
who the oldest known person with hemophilia in Fiji.

Remembering the Rain: Barry Haarde

I don’t know if this was ever published anywhere, but my dear, late friend Barry Haarde sent this to me shortly after we met. It expressed to me the depths of his soul, his feelings, compassion, caring. And his pain. Barry loved jazz and played it professionally; he said it was considered one of the highest forms of music. He was an incredibly intelligent man with a heart of gold and a sensitive, spiritual soul. And he as apparently an excellent writer. This essay is about love, our community, pain and longing. Read it and think of Barry. The title comes from a beautiful song by jazz player Bill Evans; on a CD that Barry gave me as a gift.  https://www.youtube.com/watch?v=9l7qd3jTNu4

Remembering the Rain
Barry Haarde

“There are no second acts in American
lives.”
                                                     
-F. Scott Fitzgerald

“Why do you ignore me?” asked the pretty girl
with the lustrous black hair and the dark and wounded eyes-eyes that had
captured my imagination from the very first time she’d greeted me and sweetly asked
me my name. “I know something must have happened to you,” she said. “Why won’t
you talk to me?”
It was the fall
of 1990 and I had met someone special. She loved to dance and sing and had
aspirations of a career in the theatre. We’d met while performing in a musical
production together. I played the trombone from the relative seclusion and
anonymity afforded by the orchestra “pit”, while she practiced her craft under
the bright lights of center-stage. She was everything that I was not;
unabashedly extroverted and brimming with the passions of youth and the hopeful
expectations of what she dreamed her life would become.
I didn’t answer
her questions. How could I tell her that I had been recently diagnosed with
HIV, a dreaded disease that was rapidly spreading and killing hundreds of
thousands around the globe, creating an unstoppable wave of hysterical fear,
panic, and prejudice in its wake. I was already having a bad time of it in the
summer of ’90. My brother-in-law had just succumbed to a long and arduous
battle with AIDS, which he’d contracted from the same blood products I had used
to control bleeding caused by hemophilia. We were told the medications were
safe…they weren’t.
I still recall
Pat’s memorial service.  Friends and
family gathered in the usual way as they inevitably do at such times.
Condolences were offered and pleasantries exchanged. Most of those in attendance
were aware that they were attending the funeral of an AIDS victim, but the word
“AIDS” was carefully and meticulously skirted, as if a diaphanous veil of tacit
silence had descended over the whole affair. I sat next to my brother John;
also a hemophiliac and also HIV positive. My brother was very strong and I had
never seen him cry. I silently wondered if the same thought occupied his mind;
which of us would be the next to die? The answer came seventeen years later,
when John lost his battle with hepatitis C, that “other” virus with which we’d
also been infected. His HIV status was never mentioned at his funeral either. I
had personally insisted on it.   
1990 was also the
year that Ryan White died. I had watched for several years as the story of the White
family was told and retold in the mass media. Ryan’s life symbolized the plight
of many AIDS victims at the time. He was denied the right to attend school and
forced to move from his neighborhood after someone fired a bullet into the
window of the White family’s home. Audiences around the globe watched his story
unfold in front of the seemingly endless numbers of reporters who took up
residence on the street where Ryan lived, hoping to catch a glimpse of the new
“poster boy for AIDS.” Ryan’s remarkable bravery and his long struggle with hemophilia
and AIDS ended with his death on April 8th of that unbearable year.
While Ryan
White’s life was highly publicized and often sensationalized in the media, his
story was by no means unique. I’d seen other stories in the news, like that of
the Ray family, whose home was firebombed and burned to the ground by
belligerent neighbors, simply because they feared the three young Ray brothers
who were hemophiliacs living with AIDS. They didn’t want them in their schools.
I later learned
of a young man named Robbie, who lived in rural Kentucky. Robbie had been born
with hemophilia, but he was good in school and had dreams of becoming a minister.
When his HIV status was exposed, Robbie received threats. People in their town
said they were going to “string him up from the nearest tree”. Robbie and his
mother moved in the dead of night to another town, only to encounter prejudice
and bigotry once again, including from the pastor of his new church, who
demanded that Robbie hang a sign around his neck disclosing his HIV status to
others. Robbie had unknowingly infected his fiancée with HIV. She died of AIDS
at the age of 21. Robbie never became a minister. He became ill with
complications from AIDS. Alone, except for his mother, who was then dying of
cancer, he ended his life by means of a fatal gunshot to the head.  
How was I to tell
the object of my youthful affections that my life was composed of such
stories-a life of experiences I felt certain she could never understand. How
could I explain the fate that had befallen so many in the hemophilia community,
many of whom were merely children. How could I tell her that I lived with the
same disease that had silenced the lives of thousands of others and that had
propelled many of those lives into a reality often defined by secrecy and quiet
desperation.  To these, life had come
quickly and gone, leaving not bitterness, but pity; not disillusion but only
pain.
I yearned to tell my terrible secret, but
never did. Years later, I tried to locate her, but to no avail. I wanted to
explain it you see-to make it right, to make some sense of it somehow.  I am left now with only memories; a memory of
something hoped for-something that might have been, but wasn’t-the memory of a love,
once discovered and lost, never to be relived again- and a memory of the day we
said goodbye.               
                   
“I really do love
you,” I whispered, as I embraced her for the last time and bid her farewell.
“You don’t love me,” she said dispassionately as she turned and walked away.
Our paths had parted now and I was certain we would not meet again. The skies
began to darken and a weary stillness settled in the air. I lingered for a
moment beneath the sprawling Oak tree which had shaded us as we’d sat and
talked one day while exchanging expectant glances into one-another’s eyes. A
sudden gust of wind claimed the last of its withering leaves; casualties of the
inevitable arrival of winter. Absent now were the familiar Mockingbirds that no
longer gathered and sang from amongst its gray and barren branches.  I drove slowly away in the midst of a cold but
gently falling rain, the windshield wipers beating out their own curious
accompaniment to a long-forgotten tune which echoed faintly from the radio:
“Maybe I should have saved those leftover
dreams.
Funny, but here’s that rainy day.
Here’s that rainy day they told me about.
And I laughed at the thought that it might turn
out this way.
Where is that worn-out wish that I threw
aside-
After it brought my love so near.
Funny how love becomes a cold rainy day.
Funny, that rainy day is here.”*

*  “Here’s That
Rainy Day”, words and music by Jimmy Van Huesen and Johnny Burke, published
1953.

Bleeding Disorders Awareness Month Is Almost Here!

With March being officially recognized as Bleeding Disorders Awareness Month, I’m excited to join my voice with millions of others to continue raising awareness for the causes so close to my heart. It’s the perfect time to come together and show the world what makes our community special…beyond just having bleeding conditions.

Continue reading to check out how Aptevo Therapeutics, the makers of the factor IX treatment IXINITY® [coagulation factor IX (recombinant)], are getting involved this coming month.

This is a paid public announcement from Aptevo Therapeutics and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the IXINITY website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

 

 

 

 

 

 

 

Spread the word and Just B Heard

With a community of millions of Americans who are affected by bleeding disorders, including over 4,000 people living with hemophilia B, we have the power to make a big impact when we work together.

So this March, we’re showing our support for the hemophilia B community that we’re so proud to be a part of by encouraging everyone to lend their voices and help get the word out. Together, we can shine the spotlight on this rare factor IX deficiency and bleeding disorders overall, plus more importantly, the incredible people behind them.

Because you are a vital part of the bigger bleeding disorders community, and you deserve to Just B Heard.

Join us in the IXINITY Family Room on Facebook all month long to see how you can get involved, plus watch fellow community members share their stories at IXINITY.com.

IXINITY INDICATIONS AND IMPORTANT SAFETY INFORMATION

What is IXINITY®?
IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION for IXINITY®

  • You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
  • You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
  • You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
  • Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
  • If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
  • Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
  • The most common side effect that was reported with IXINITY during clinical trials was headache.
  • These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.

For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.

You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Aptevo BioTherapeutics LLC, Berwyn, PA 19312

IXINITY [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

© 2018 Aptevo BioTherapeutics. All rights reserved. CM-FIX-0214