Angels Among Us: Steven Riedle and His Gift to China

Chinese boy with hemophilia before his accident

 

Tuesday is World Hemophilia Day, and we celebrate by sharing stories from patients in developing countries, and the angels among us who help them. Here is another story by Steven Riedle, who has been helping children with hemophilia in China quietly for years. Thank you, Steve!
 
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My brother Jack got the call for his liver transplant in October 2016. [This
would cure his hemophilia eventually] On that same day, he received his last regular
ship of factor VIII. I was hoping for that, so I could donate his factor to the
island of Hainan, in China. I waited a few months because I really didn’t believe
the transplant would cure his hemophilia. It did! The product was shipped.
 
The next year while playing with my neighbors in the backyard on
the day of the eclipse, in August 2017, I got a message asking if the medical team in China
should use the factor we donated to try to save a young boy’s life. He was only
four years old, and had fallen and hit his head. Of course, I said yes, try it!
I knew a mom there, Xiaohua Liu, who has a son with hemophilia and she handles
shots and factor needs on the island. A few years ago, I even bought her a new
moped so she could get around better to help the other hemophilia families. This
is China: she risked jail, while gathering the hemophilia community at the
island, and then petitioning the government for more factor for the patients.
Instead of going to jail, she won the petition and got nine boxes of 200 IU of
factor a month! This was a success but hardly enough. My brother’s factor came
in much larger assay sizes: 4,000 IU every other day. The little boy needed
bigger shots for physicians to even attempt the surgery. They had to take a piece
of his skull off to relieve pressure on his brain. I know he would have surely
died without this gift of factor VIII. Mostly, I thought I would just be
keeping children from having to be wheelchair-bound. Saving a life wasn’t
really in my mind when I sent the box. 
After head injury: 70% die soon after getting in this condition
 
Here’s the thing: my brother Frank died when he was 19. I was 17
years old then. Back in 1982, they didn’t even try to give him a proper dose of
factor, as I remember. Maybe they didn’t have the surgery option ether. I
really don’t know. All I know is about 15 hours later he was dead. Saving this
boy’s life— and I don’t even know his name— in a way helped heal me. That event
back in 1982 broke me. It would be years later before I cared about my future
or school again. Helping to save this boy’s life was a great thing for me, and for
the boy and his family. Those few times I found some factor in my luggage or
stuffed in the back of the cabinet where I keep all the hemophilia stuff
certainly can save a life. Even just helping to relieve the pain of an
untreated bleed for a person living in a country where factor is rare.
 
 
Tweezers holding piece of his skull,
taken out to relieve the pressure 
The boy lived, and here he is in this video. There are children in
need of factor all over the world. Donate factor here. Save a life there.
 
Steve Riedle has
hemophilia, and is the inventor of Noseebudd, a therapeutic device to help stop
nosebleed. You can purchase a Nosebudd at nosebudd.com
 
Recovery
Boy with his baby sister at
birthday party
 
 
 
 

 

How Blood Brothers Support One Another

Untitled Document

We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines.  We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines.

In 1990 my twin brother Luigi, age one, had a swollen left knee. Our parents had him tested, and he was diagnosed with severe hemophilia A. Because we are twins, I was tested too, and also diagnosed. It was very tough living with hemophilia, especially without access to factor VIII. We just took pain medication when we were in pain. My worst, most painful bleed was in 2008. I was coughing hard for days, and then I felt a small pain in my lower abdomen. Ignoring it, I went to school. There I felt the pain worsen, and I had trouble urinating. It seemed that something was blocked inside me, and my lower abdomen was swelling. I went to the hospital and was confined for seven days. The doctors did an ultrasound and inserted a catheter so I could urinate.

I was told it was good that we rushed to the hospital, as the internal bleeding was worsening and might have been fatal. I was infused with factor VIII for five days. This cost a lot, and we had no money then, so my parents went fully into debt. A year later, Blood Brothers Aid was established by a group of men with hemophilia in Manila. My brother and I were among the first board members!

I was able to finish college, with the assistance of Blood Brothers and Father Don Kill, who volunteers to help people with hemophilia in the Philippines. Now I’m employed, and I’m still a member of Blood Brothers Aid after nine years. I participate in their activities, including Christmas parties and summer camp. I’ve learned from my past bleeding; the pain I experience now is less severe, and my joint bleeding episodes are fewer. I’m getting infused with factor VIII that is donated to Blood Brothers from Project SHARE, but I take it only when the bleeding and pain are not tolerable. Without Blood Brothers, I would not be able to work. I’m very thankful to Blood Brothers, Father Donald Kill, and Project SHARE!

Leeroy Atanacio
The Philippines

Puerto Rico: Mi Corazón se Rompe

My heart breaks. I sit at home tonight, trying to imagine what it would be like to have my house half submerged in water, a fallen tree slicing through one bedroom, my clothing and photographs ruined, the sewers backing up into the rushing water from the overflowing streets, my two cats missing and presumed drowned, my daughter huddling with me, unable to contact anyone for help because all electricity is out, and our cell phones were lost during the roaring winds, downed lines, and river of rain left in the wake of a massive hurricane. Our beds are soaked; food in the fridge ruined and submerged in the muddy water; medicine soaked; streets impassable.
No way to contact relatives; no way to call for help. Creatures of the night and underground now emerge to gasp for air: snakes, spiders, rodents, carrying disease and threat of bites.
 
Society has broken down and we wait and wait in the dark, throughout the day, and into the next night, for help of any kind. We’re hungry and thirsty, dirty and shivering. And alone.
This is the situation for so many families in Puerto Rico, where not just one town, or even just the capital was pummeled by Hurricane Maria, but the entire island. This tropical semi-state, a possession of the US, a warm, colorful albeit poor place, dependent on tourism and the welfare of the mainland, is now a ravaged
wasteland, and it will take months, perhaps years to rebuild.
 
I feel for Puerto Rico so much, probably even more than for the states of Texas and Florida. The needs in PR are massive; they were in economic trouble long before Maria hit; it was so bad that many Puerto Ricans were leaving the mainland in droves, for better medical care and education. And PR is an island, making rescue and ferrying aid so much more challenging.
 
I have been going to Puerto Rico since 1998, when I first visited to check out the hemophilia situation there. (Read our in-depth article about hemophilia in PR here) Though they belonged to the US, and were entitled to US funding for healthcare, they only used one factor product, a plasma-derived! Through the years, helping the newly resurrected Puerto Rico Hemophilia Association, we all helped bring patients together and pressured the medical community to investigate new products. The result? A variety of products in the mid-2000s, including recombinant, and a strong, patient-driven hemophilia association. I watched this group form, develop and grow into a powerhouse.
And this is before Hurricane Maria…
Mother Nature has set us back, but has not defeated us. I say “us” because I am still with PR. At the NHF meeting in Chicago just in August, I met with one of the island’s pharmaceutical reps and we talked about hosting another visit, to do more leadership training, to keep things moving forward. It will have to wait.
 
For now, we urgently need to get supplies into PR. Because our company and especially Zoraida, director of Project SHARE and who is from Puerto Rico originally, deals with humanitarian shipments, we will be contacting the manufacturers to see who is donating factor to the hospitals. We will be asking our readers and friends on Facebook to consider donating material supplies and necessities.
 
But… many people hesitate to donate to a place like Puerto Rico. Will the donations go into the right hands? I get it. At Project SHARE we diligently follow each vial of factor to its destination. But what about clothing and supplies to Puerto Rico?
 
We have a way. Allison Plaud, a mother of a child with hemophilia I met on one visit (and who has since emigrated to mainland US), has assured me that one of her trusted friends, a businessman, is collecting donated items and will be shipping them on Saturday to PR.
 
We endorse Allison and her friend, and beg everyone in the hemophilia community to donate items to ship.
 
Here are the items, and 
 
where to donate!
 
And here is the situation in Puerto Rico.
 
I am haunted by the images, and by their suffering. Forget athletes kneeling, politicians sniping. Let’s be real Americans and do
what Americans are best known for: being the first to help. Puerto Ricans are Americans and we must help them. This
is when I am proudest to be an American!
 
 

 

 

Speak Out, Create Change!

Kenyatta National Hospital

It’s
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.

As
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.
The
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

“My
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.”

One
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

Other
take aways from Dr. Kibet:

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

Kibet
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.

He
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.
He
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
Emmanuel

This
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

Getting Shirty With Me

Aaron Craig with his latest creation

So if you received and read your issue of PEN by now, you’ll note that we have a great feature article on apps that help you track your bleeds and sometimes even track your factor usage. Important given what’s coming don in the insurance field these days.

But that’s not the point of this blog. The author is a brilliant and creative young man with hemophilia named Aaron Craig, a hemophilia wunderkind, who makes movies (really), develops apps and roams the earth looking for things to invent.

When I noticed a few people wearing these shirts at hemophilia events, I wasn’t too surprised to note that his company, MicroHealth, had created them to raise awareness of hemophilia and the need to take your factor.  The shirts  say “keep calm and factor up” on them. Aaron writes, “The community has loved them. So what we did was we put them up for sale online and 100% of the profits go towards a chapter of the purchaser’s choosing. Each chapter has or non-profit has their own promo code to enter during checkout.” Nice!

Aaron even created a code for our own Project SHARE, our factor donation program. It’s simply “share”. The link to purchase the shirts is: http://microhealthnyc.myshopify.com/products/keep-calm-and-factor-up-t-shirt

The profits per each shirt sold with a code comes to about $10 per shirt. When the promotional is done on August 1st, Aaron will tally up how many shirts were sold with the SHARE code and will send a check for the amount of profits accumulated. 

This is so important. Last year we shipped about $6 million worth of factor. Our shipping costs to developing countries is well over $20,000. We never expect the recipients to have to pay shipping. So Aaron’s idea is timely and helpful. Go ahead, buy one and get shirty with me!

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