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Dogs Get Hemophilia, Too

Laurie Kelley July 21, 2014

Here’s a wonderful article I discovered on the newswires, and shows that dogs suffer from hemophilia too! This story has a happy ending and makes me wonder if factor concentrate would work on canines as well as humans?

Sick Dexter’s saved…by his hero hound brother!

By Katie Mansfield

A GREYHOUND won the race of his life – after his brother donated blood to keep
him alive. Dexter, aged six, was close to death after he suffered internal bleeding while undergoing surgery for a suspected muscle tear.

His condition of hemophilia meant he couldn’t stop bleeding and vets at YourVets24,
in Brook Road, Rayleigh, said he needed a blood donor to keep him alive.

So in stepped Dexter’s brother Timmy, also six, to save the day. Both dogs
are now recovering at their home in Richmond Avenue, Shoebury.

Samantha Haynes, 42, Dexter and Timmy’s owner, said she was relieved to have them both back home safe.

She said: “It was very scary and we really thought Dexter was going to die. The vets said if we had not got him there, he would have died. We’ve had them both since they were two and they are part of the family. They had been abused before we got them and Dexter was a nervous wreck – he was even
burnt with cigarettes when he was a puppy. He’s had
such a tough start in life that we couldn’t lose him in this way. They were
in Ireland being trained up and were separated for six months and didn’t even
remember each other. We took them on and they have never raced, and are both still very nervous.

“Dexter is such a loving dog and is so gentle. If he had died we would have been mortified – he is like one of the children. Timmy really did save his brother’s life. They are both doing fine and we are spoiling them both.”

Dexter was taken into the vets after Samantha noticed he was acting strangely. She said: “He put his head on my lap and I stroked him and he yelped in pain. Me and my husband rushed him to the vets.”

They discovered his internal bleeding could not be stopped due his hemophilia, so his only hope was a blood donation from another dog. Fortunately,
Timmy, was a blood match. The family had no idea Dexter suffered from hemophilia. Samantha said: “We have to be extra careful with Dexter now and he is walking in pain.”

Catalina Thiersen, vet at YourVets24, said: “Very few animals under these conditions survive – he’s a very lucky dog.”

The Echo,

http://www.echo-news.co.uk/news/11312996.Sick_Dexter___s_saved___by_his_hero_hound_brother_/

John Schmitke: When a Role Model Meets His Role Models

Laurie Kelley July 12, 2014

Note from Laurie: I’m sharing this wonderful first-person report from a young man who attended the WFH Congress in Melbourne in May. A refreshing look at a hemophilia congress from a different point of view.

My name is John Schmitke and this is my story. I’m currently the Vice President and Chairman of the Youth Committee at the
Canadian Hemophilia Society, Manitoba Chapter. As a young man living with hemophilia, I recently participated in a program which gave me the opportunity to be the Hemophilia Champion. The project allowed me to raise awareness about the disorder in Canada by taking part in media interviews on World Hemophilia Day and promoting an inspirational video that focused on my life and highlighted how I overcame my adversity.

https://www.youtube.com/watch?v=WobNfQgqBXA

One of the most exciting parts of the program was that I was to represent Canada at the World Hemophilia Congress in Melbourne, Australia.
The World Hemophilia Congress is an event that allows people affected by hemophilia to come together to discuss the disorder and treatment options. I was extremely excited to be visiting Australia!

Once I arrived in Melbourne, I touched base with my friend Justin who is also the co-chairmen of the National Youth Committee. He was already at the conference center and had managed to find an organized youth event.

One of the things that I was looking forward to the most on my way to this conference was that I would be meeting people from around the world that had the same but also different challenges that I have had. Health care in Canada is among the top tier system in the world, which means that there is a lot to be learned from my peers in the tiers below the one that I have been privy to.

When people meet me they would never think that I have a
disorder of any kind, never mind one that typically manifests in physical
symptoms. This is not the case for
everyone here.
This fact would become more apparent as the week progressed. I should say that I have always tried
to be acutely aware of what hemophilia is like for the majority of people
suffering from it, but that awareness is much different when those people
surround you.

At this youth event there were people with arms that could
not straighten, knee replacements, in wheel chairs, suffering from inhibitors
that prevent medication from being effective, and just living with daily
reminders of what it is we have.

Adam, Andrew, and Chris had the greatest influence on me leaving this Conference.

I don’t want to focus solely on the trials that this disorder can place on people. There were others like me, people that have been lucky in their
lives. People that had no outward symptoms of having a bleeding disorder. I use the word luck, because luck it would seem in a big part of it. The other part is we have become very good at managing our bleeding disorders. Either consciously, or in some cases instinctively, finding a way to minimize the effects by staying ahead of them.

Andrew has an inhibitor. He also struggles with target joints. As a result he has had a complete knee replacement and had both of his
ankles fused. He is only in his twenties. He has the same type of hemophilia as I do and has had a completely and much more difficult set of challenges than I. Andrew went through a lot of his life accepting his limitations, but at some point he stopped accepting things for what they were
and decided to make them what he wanted. He lost a lot of weight, began fitness training, and lived his life the way he wanted to live it. If you were to ask Andrew he wouldn’t say it was an easy accomplishment, but he would say it was one worth all the effort several times over.

Chris is currently in better shape than I am, which is something that I have never seen in someone who has a severe bleeding disorder. I know that
sounds conceited, but this level of physical ability is not something that is seen in people with severe hemophilia. I was surprised, and I admire Chris for what he had achieved, knowing the dedication that it took to achieve it. Let’s just say that I was used to being in the lead in the gym, period.
I have never had the experience of having a hemophiliac come near my physical ability, never mind surpass it. The experience was both humbling and immensely satisfying.

Adam also left a lasting impression on me. He’s a young man who relies on a wheelchair because he’s paralyzed from the waist down. This is a
result of a bleed near his spine shortly after he was born that was caused by an epidural. He doesn’t want sympathy; no one with a mental fortitude as strong as his does. He as accomplished as anyone that I would meet, so he doesn’t need sympathy either. It is people that are this remarkable that inspire, though. They are the true role models among us. To go through life with a severe bleeding disorder as well as being unable to walk, but
accomplishing as much or more than most people with neither of these challenges shows that with effort and the willingness to adapt, these things are no handicap.

The people representing the 120 countries attending this conference have knowledge to be gained. There are all kinds of sessions on treatment methods, medications, complications, challenges. But it’s witnessing the culmination of life experience within the attendees that make up the “patient population” that you gain the most.

If I can accomplish one thing in my involvement with my
local, national, and global chapters, it would be to share that knowledge with the effect of changing lives for the better.

I went to Melbourne because some people see me as someone
that has experience worth sharing. While I believe this, it is the experience of others that drives me to continue living in an exemplary way.

Thank you to everyone that provides me with these types of
opportunities. Most importantly, thank you to the people that make these opportunities worth experiencing.

Hemophilia B: Explore, Branch Out, Give Back!

Laurie Kelley July 6, 2014

Anyone who reads my blog—even occasionally—knows I love adventure. In fact, I am on my way today to go white water rafting in Maine… class IV and V rapids! I love adventure, and thankfully for me, I was motivated and influenced by some incredible people—starting with my six
brothers! Based on those positive experiences, I’m motivated to share with my readers a new adventure opportunity that I recently discovered.

Please read below about this great opportunity from the Coalition for Hemophilia B and
Emergent BioSolutions!

The Generation IX Project is a new adventure education program being offered by the Coalition for Hemophilia B, with the support of Emergent BioSolutions. This national mentoring training program for young adults and teens with
hemophilia B will provide them the opportunity to escape the everyday routine and learn some adventure skills in an experiential program. The Generation IX Project is designed to develop specific and tangible skills that will enhance the quality of life and give a better sense of self to young adults with hemophilia B.

The leadership of the project is being guided by Patrick Torrey, president and founder of Physis, Inc. Pat “Big
Dog” Torrey has been designing and delivering innovative experiential education programs and trainings for over 15 years. Pat started and runs Physis. Physis offers unconventional, adaptable, relationship-centered
adventure education programs that teach those with chronic medical conditions how
to lead rock-star lives. He challenges and inspires people to explore
outside of their perceived limits and strive for excellence in their lives.
He and his staff run trainings and consult within the bleeding disorder
community for camps, foundations, and conferences. Physis has been
running some of the most successful, fun, and sought after programs in the
bleeding disorder community for close to a decade.

Since its inception, Physis has worked to serve the bleeding disorder community and seeks to continue developing programming that empowers teens and young adults. This dynamic collaboration from Physis, the
Coalition, and Emergent is sure to create a life-changing experience for all involved.

Calling All Mentors

If you are an adult between the ages of 18 and 29 with hemophilia B, you have already experienced a lot of bumps in the road on your way through your transition to independence. As a Generation IX mentor, you’ll share your experience and the insights you’ve gained with a group of teen mentees and have an amazingly important impact on their lives. You will begin your training as soon as your application is accepted. You’ll be flown to a
multi-day retreat at beautiful Camp Collins, a state-of-the-art camp facility just outside Portland, OR. Camp Collins is home to villages of ‘out of the ordinary’ cabins that are perched in the forest canopy connected by a walkway, and contains one of the nation’s most diverse high ropes challenge courses. There, you’ll
participate in intensive onsite training and then host a mentorship retreat for your teen mentees. The leadership skills and volunteer experience you will gain will look great on your resume!

As a mentor, you will participate in a two-day experiential training program in interpersonal skill development and group dynamics, as you find your personal leadership style while you learn and live with a group of other motivated mentors. This is all in preparation for when you help deliver a challenging and meaningful residential weekend program for a group of teen mentees. The instructor team will help guide the process as you get to immediately practice the skills learned.

Calling All Teens

The Generation IX Project gives you and other teens (age 14-17 years) with hemophilia B an adventure and the experience of a lifetime. You’ll learn solid skills from Generation IX mentors a few years older, who also have hemophilia B and are familiar with the many changes teens experience, such as heading off to college, going off on their own, and taking more responsibility for their treatment. These mentors will guide you
through a weekend of high ropes challenge course experiences, living in a temperate rainforest, and connecting with other participants living with
hemophilia B from around the country. This is a chance to expand your life experiences, improve your quality of life, and build your self-esteem—you might just be amazed at what you can do!

Living with hemophilia B is an ever-changing journey, and teens and young adults with hemophilia B are becoming more independent than ever and
taking responsibility for their own care. The Generation IX Project sounds to me like a fantastic opportunity to meet some of your peers and share your experiences.

Download additional
information and an application form here:

Mentor Application

Teen Application

Send your completed application to Kim Phelan at hemob@ix.netcom.com at the Coalition for Hemophilia B to lock in your spot. Applications are due August 1st! Get moving!

To learn more about how Emergent BioSolutions is making a difference for people living with hemophilia B, register for updates at www.ebsi.com/hemophiliab.

This announcement was sponsored by Emergent Biosolutions.

Pulse on the Road in San Diego!

Laurie Kelley June 30, 2014

Pulse on the Road is our three-hour insurance symposium that updates families with bleeding disorders on insurance reform in their state, the Affordable Care Act (ACA), and how to compare and research insurance policies. Sponsored by Baxter Healthcare, implemented by us, we bring expert speakers, like NHF policy expert Nicole Quinn-Gato, to families around the country.

This week, San Diego! We had a cozy gathering of about 40 family members at the San Diego Zoo, minus about 40 kids who went off with “Birdman” for the kids program. Seated in the Treetop Conference room, families listed to our speakers all morning, while Spanish translation was provided by specialists to our Latino families.

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.

I next spoke about the importance of choosing your own plan. While there is a lot of technically policy stuff to cover in these symposia, I aways stress to the audience we teach this to save you money, out of pocket expenses. And to emphasize this, I ask a question after each speaker, relevant to what they just presented on. Whoever gets the right answer gets $10! This wakes up our audience, creates a friendly competitive spirit, and is just plain fun!

Our audience got so into this game that even Robert, the man who set up the translator booths—and has nothing to do with hemophilia—answered one of our questions correctly first! Of course, he didn’t get the $10 as he is not related to hemophilia!

Laurie helps Taylor with the Marketplace

And lastly, Nicole gave a one hour live demonstration of “coveredca.com,” California’s marketplace. Wow, what a challenge! The exercise showed how complicated the California Marketplace is; it was a tough exercise, but I was proud at how families stuck with it, got the answers they needed, and ask us all for assistance in locating certain pages on the site. We had provided laptops for each table and they were all used well!

Lunch was served afterwards, where we got a chance to socialize with the families. This was then followed by goodbyes and a visit to the largest zoo in the world, compliments of Pulse on the Road!

Next stop? Houston in August!

Be a Hero!

Laurie Kelley June 22, 2014

To continue with our updates of programs and services from Pharma, here’s a new and exciting one!

Remember when you were evolving from a teenager to a young adult – trying to assert your independence, work through all the social politics of high school, and figure out the direction of your life? Then consider the challenges of living with hemophilia on top of that – it can add a whole other layer of complexity. That’s why Novo Nordisk is offering HeroPath™ to help youths between ages 15 and 20 better navigate this transitional life stage.

HeroPath will be led by Jeffrey Leiken, Master Trainer at Evolution Mentoring and creator of HeroPath – you may remember his passionate speech about life transitions and personal growth at National Hemophilia Foundation’s 2013 Annual Meeting. HeroPath will focus on helping participants grow their skills for success in areas including relationships, education, and careers.

Here’s the exciting part: Up to 25 selected US participants with hemophilia A or B* between ages 15-20 will have the opportunity to work directly with Leiken, his team of expert coaches, and their peers at a kickoff weekend in Chicago from August 22-24, as well as continue to receive personalized monthly coaching for the following year.

Visit http://www.changingpossibilities-us.com/HeroPath to complete your official HeroPath™ application, including several multiple-choice questions and an up to 150-word explanation of why you are a great fit for the program. Prefer not to write? Provide a 60-second video explanation instead – just upload your video to YouTube™ and paste the URL into the application form!

All entries must be received by 11:59 p.m. EDT on Thursday, July 17, 2014. Leiken will select up to 25 participants based on responses to the multiple-choice questions and the level of creativity and original thought conveyed through the essay or video entry.

What parents need to know: HeroPath™ isn’t just a weekend retreat – it’s a yearlong program designed to help offer teens or young adults the tools to identify:
·        What direction to move in professionally based on interests, strengths, talents, and natural proclivities
·        What kind of people to associate with personally and professionally (Leiken and his team will help participants give voice to their own values)
·        What kind of person they want to be

HeroPath™ is also structured to help develop their ability to manage their state, stay focused, and perform under pressure to help make better decisions.

Questions? See Complete Official Rules at www.changingpossibilities-us.com/HeroPath for details.

*Participants cannot be on a federal health care program.

This sevice announcement was sponsored by Novo Nordisk.