Inhibitor Family Camp

Resources for People with Inhibitors

In 2005, when I first sat with US families with inhibitors and
listened—really listened—to their challenges, I was blown away. First, by how
much they struggle: standard factor doesn’t work to clot the blood, different
treatment protocols sometimes fail, children are on prescription painkillers,
with ports and surgeries. Second, by how separated they were from the rest of
the community, shunned almost. “No one understands our challenges,” one mother
told me, “and when we share, they back away.” Hemophilia with inhibitors was
almost like a separate disorder. Third, I was amazed by how stoic and strong
these families are! And even more amazed by the lack of resources for them.
            I’m
happy to say so much has changed in the US since 2005. We now have inhibitor summits,
financial aid programs, books, and even a camp! All for families with
inhibitors. At long last, our hemophilia community has embraced the inhibitor
families, and we’ve united.
            When
I learned about the struggles of inhibitor families, I vowed to write a comprehensive
guide to dealing with and living with inhibitors—and I did! From the interviews
for Managing Your Child’s Inhibitor
emerged the need for a summer camp. A colleague took that idea and eventually
did just that. What will knowing the needs of the inhibitor community lead you
to do?
            Begin
by ordering these free resources and enrolling in the patient assistance
programs. Having inhibitors is tough enough, but knowing there are colleagues
and professionals waiting to help you will ease the path forward.
BOOKS
Managing Your Child’s Inhibitor
Laureen A. Kelley and Paul Clement
2009
Written by parents of children with hemophilia, this
comprehensive resource is the first and only book about inhibitors in the
world. From the parents’ and patients’ point of view, it extensively covers
topics such as pain management, surgery, family life, products, and treatment
regimens. Published by LA Kelley Communications, Inc. with funding by an
unrestricted grant from Novo Nordisk.
To order: www.kelleycom.com
The Great Inhibinator!
Chris Perretti Barnes
2006
This richly illustrated storybook introduces a preschool boy
with hemophilia and an inhibitor. He manages his feelings by becoming a
Halloween superhero called the
Great Inhibinator. Written by the mother of a child with
hemophilia and inhibitors. For ages 4–7. Sponsored by Bayer HealthCare and
BioRX.
To order:
www.biorx.net
PATIENT PROGRAMS
Inhibitor Education Summits
The only national educational forums for inhibitor patients
to meet and learn about their rare complication. Offers lectures from experts
in the field and interactive forums with parents and patients. National
Hemophilia Foundation (NHF) provides these summits only for people living with
inhibitors, covering most travel expenses for participants.
Funded through a grant from Novo
Nordisk Inc. and Baxalta Incorporated.
For info: www.hemophilia.org
Inhibitor Family Camp
Camp addresses the unique needs of children with active
inhibitors, and their families. The full weekend of education, support, and fun
is held twice yearly, with camper costs covered. Funding provided by Novo
Nordisk Inc. Camp is designed and operated by Comprehensive Health Education Services.
For info: www.comphealthed.com
FINANCIAL &
PRODUCT ASSISTANCE
NovoSecure™
Novo Nordisk’s NovoSecure is a comprehensive patient support
program for patients with hemophilia A, hemophilia A or B with inhibitors,
factor VII deficiency, acquired hemophilia, Glanzmann’s thrombasthenia, or
factor XIII deficiency, regardless of product choice. Replacing SevenSECURE®,
NovoSecure allows enrollees to apply for a variety of programs, including
• Competitive scholarship program
• Life coaching with HeroPath™
• Career counseling
• Insurance support
            Novo
Nordisk also offers product and copay assistance programs to eligible patients
who have been prescribed Novo Nordisk products.
For info: www.mynovosecure.com
1-844-NOVOSEC (1-844-668-6732)
CARE
CARE (Coverage, Assistance, Resources,
and Education) to help patients take control of their healthcare needs through
insurance and product assistance. Copay or coinsurance support may be
available to reduce out-of-pocket costs associated with a Baxalta product.
Baxalta Resource Helpline 888-229-8379
To enroll in CARE: 855-322-6282

A Camp to Call Their Own

By Janet Brewer
 
The bleeding
disorder community is small, comparatively speaking. Smaller still
is the community of families and individuals affected by an inhibitor. But what
we lack in size, we make up in our voices.
The hemophilia community has advocated for better care, better products and better programs to
support our daily needs. As a result, we have arguably
the best treatment model in the world. In the last 20 to 30 years, hemophilia has
realized a standard of care that involves routine prophylaxis. This 2-3 day per
week regiment enables most affected by hemophilia to lead a relatively “normal”
life. Annual chapter meetings, national education conferences offer a plethora
of information specific to those living with hemophilia. Week long summer camp
programs where self-infusion is taught and opportunities to meet peers in an
environment that promotes leadership are a right of passage for our community.
Yet the smaller
subset of individuals and families affected by an inhibitor continues to
struggle. An inhibitor diagnosis changes the entire landscape of hemophilia
treatment. Routine prophylaxis becomes a thing of the past until the inhibitor
is tolerized. Immune tolerance treatment (ITT) can take years of daily,
sometimes twice daily infusions and even then, not every child becomes
tolerized. There is no single factor product that works to stop bleeding
consistently. Bleeds can take days, even weeks to stop. Hospitalizations are
frequent and family life is turned upside. Attending a weeklong hemophilia
summer camp often becomes a wish. When attendance is possible, there is a high
probability that there won’t be anyone else there with an inhibitor. Participating
in many of the activities that other blood brothers can do with prophylaxis is impossible.
As one camper with an inhibitor states, “How I envied them and wished I could
do what they could do.”
Jane Cavanaugh
Smith and Janet Brewer conceived the idea for Inhibitor Family Camp. As long
standing members of the hemophilia community and mothers of sons with an
inhibitor, they endeavored to bring families affected by an inhibitor together
in an activity filled, intimate environment and where better than camp? The
very nature of a camp setting provides opportunities to try things for the
first time, stretch ones limits and create peer relationships.
In 2010,
Comprehensive Health Education Services (CHES) sponsored the very first
Inhibitor Family Camp at Victory Junction in North Carolina. For the first
time, children with an inhibitor and their families had a camp to call their
own. Supported by an educational grant from Novo Nordisk, its goal then and
still is to bring together families who continue to struggle with the challenge
of an active inhibitor. Families of a child whose inhibitor has tolerized are
welcome if space allows. With camp now in its third year, CHES has partnered
with Serious Fun camps (founded by Paul Newman), The Painted Turtle in
California and Victory Junction in North Carolina to bring two Inhibitor Family
Camp programs to the inhibitor community. In response to participant requests,
this year’s camp program will offer three nights of education, activities and
fun!
Inhibitor Family
Camp is limited to 25 families per camp and slots fill up quickly. The Painted
Turtle session will be held Friday April 19 to Monday April 22, 2013 in Lake
Hughes, California. Registration opens on
January 4, 2013
. The Victory Junction session will be held Thursday October
17-Sunday October 20, 2013 in Randleman, NC. Registration will open on July 1, 2013. Each of these programs
are offered totally free of charge to eligible families.
Families
response to what Inhibitor Family Camp means to them include:
“I loved all the
activities. Lots of things to do. The boys had a wonderful time. I have no
complaints except we didn’t want to leave! Thank you!”
“Hanging with the other
kids and connecting with them through similar experiences.”
“This program has been fully instrumental
to my family in helping us deal with hemophilia and inhibitors.”
For additional information,
please call Comprehensive Health Education Services at 781-878-8561. 
Click below to view Comprehensive Health Education
Services’ 
Inhibitor Family Camp Brochure http://attachment.benchmarkemail.com/c51644/2013_Inhibitor_Family_Camp.pdf  

Inhibitor Camp This April

Camp is coming early this year!

US hemophilia families with inhibitors are invited to apply for the third Inhibitor Family Camp weekend to be held April 13-15, 2012 at The Painted Turtle Camp in Lake Hughes, CA.

This program, run by Comprehensive Health Education Services (CHES) and sponsored by Novo Nordisk, is designed for families with a child age 6‐19 with an active inhibitor. These camps are special: children with inhibitors often report that they cannot participate in many of the activities offered at a traditional hemophilia camp due to the threat of injury. Or that if they do choose to participate, they may spend the rest of the week in a wheelchair watching from the sidelines.

Inhibitor Family Camp provides these children and their families an opportunity to come together with their true peers in the hemophilia community.

Space is limited so all registration materials must be completed in full by February 17, 2012. There is no cost to families associated with Inhibitor Family Camp. For additional information, please call Comprehensive Health Education Services at 877-749-2437 or visit www.inhibitorfamilycamp.org.

Great Book I Just Read
Steve Jobs by Walter Issacson (Kindle version)

This is an incredible read, quite possibly the best book I read in 2011. Not a perfect book, however, because there are gaps, almost as if Issacson rushed to get it out following the death of Jobs on October 5. Issacson was asked by Jobs to write his biography, and despite Jobs’s well known control issues, gave full control to Issacson, and engaged in 40 interviews with him. Issacson also interviewed Jobs’s family, coworkers, enemies, friends and wife.

This 600 page tome traces Jobs from his birth, adoption, and early childhood years all the way through his stint at Reed College, dropping out, founding Apple in his father’s garage, and the impact his adoptive father had on his curiosity about all things electrical and his father’s love of perfect workmanship, as we see in Apple products today. It’s almost two books in one: a fascinating account of the rise of the personal computer industry in Silicon Valley, and the infamous competition with Bill Gates and Microsoft (hard to believe Jobs and Gates were born in the same state, same year!). For those of us who lived through these years, it brings back memories and completes a story. For the new generation who takes these marvelous machines for granted, this history is a must read.

The other “book” is a searing account of Jobs’s psyche: his infantile approach to managing people, his tirades, temper tantrums, his eating disorders, control issues, his obsessive perfectionism, his total lack of empathy, his need to squash others’ self-esteem. If there is one psychological term you can hang on him, it’s narcissism. He was a genius, a visionary who saw things before they were built, who knew exactly what he wanted because he could already see it before him when no one else could. He invented an industry that has completely changed people’s lives and the course of history. He didn’t do market research to find out what the customer wanted; he knew what people wanted. He created need. But he left a scarred and brutalized wake, and no doubt his children will tell all one day. I have been an Apple customer since the 1980s, from day 1. I love the products, the marketing, the beauty of the machines, the integrated approach to everything Apple makes. They make intuitive sense, and Jobs knew this. He knew so much, saw so much, and had he lived, his impact would have been even more tremendous. I couldn’t help but feel sorry for his children, and have no doubt that his cancer originated from his chronic high stress levels and internal obsessions. When you go into an Apple store next time, look at the Restroom sign. The grey color took a team, including Jobs himself, 30 minutes to decide what shade of grey. Jobs involved himself at every level. When you live your entire life to that extreme, it takes its toll internally. What price genius? This book seems to mournfully ask that, while at the same time, marveling at an extraordinary man who led a great team that changed the world. The frustrating part comes when even Issacson, for all he interviewed Jobs 40 times, still could not but scratch the surface was what drove this man. No doubt, Jobs wouldn’t let him in; maybe no one got in. Five/five stars.

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