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
 
 
 
 

 

A Nose by Any Other Name


There’s an old saying about making lemonade when life hands you lemons; Steve Riedle must have made gallons. Here is a guy with hemophilia with a story, and who is trying to make life better for others. He is the inventor of NoseBudds, clever gel cold packs that are tailored for the nose. They are great for anyone with nosebleeds, but especially for hemophilia and von Willebrand disease patients who have bleeds.

Steve is the youngest of 11 children: five boys with hemophilia. Three brothers died of hemophilia. Two brothers never even used cryo or factor and died of bleeding. The last one to die was 19; Steve was 17 at the time. Just try to imagine how to deal with that kind of loss. “That was a dark time,” Steve writes, “but seeing the new generation of kids running around being much better made me feel better. Still I think of all those who I knew and are gone now. Mostly the kids, because they never knew normal because of [being] outcasts.”

Steve developed NoseBudds to make a difference in the lives of others. Check them out at www.nosebudd.com. They are inexpensive at $7.95 and can help with bleeds. “I’m trying to make a point with Nosebudds– to make a stand, keep resilient, and even with all the pain and loss something great can be achieved. Be a victim of hemophilia or a warrior, we have the choice.”

You can be friends with Steve on Facebook!

Good Book I Just Read
Mind Over Matter by Ranulph Fiennes.
In November 1992, the world’s “greatest living explorer” made it into the Guinness Book of World Records by crossing Antarctica with Dr. Michael Stroud, unsupported, alone, covering 1,350 miles in a hellish 95 days. Toting sledges weighing 450 pounds, in temperatures as low as 85 degrees below zero, suffering starvation, frostbite and everything else you can imagine, these two men didn’t achieve their goal to completely cross but broke the world’s record for longest unsupported polar trek. It is a riveting account and remarkable, stunning achievement. But you will ask why? To what purpose? There was no record or achievement other than to see how much suffering the human body can stand. Fiennes is blunt, lacks charm or wit, and is very critical of his partner. Makes you long for the diaries of Mawson or Shackleton, where dignity and respect seemed to matter most. They raised millions for the British Multiple Sclerosis Society, and I found the book inspirational, though a bit harsh on Stroud. Fiennes includes an excellent set of Appendices on the Antarctic, including routes, equipment, mileage and history of exploration. Three stars.

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