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How to Handle a Bleeding Disorder During the School Year

Laurie Kelley September 4, 2016

The start of a new school year is a stressful and exciting time for both kids and parents. If you’re the parent or caregiver of a child with a bleeding disorder, you have a lot more to consider than just which school supplies to buy. There are precautions you can take before and during the year to ensure things go as smoothly and safely as possible. 
Talking to Your Child 
The best way to prepare for the new school year is to get together with your child, their doctor, and the school staff to agree on a plan. Start by having a one-on-one conversation with your child. Make sure they understand their condition and encourage them to speak up if they need help or are experiencing a bleed while in school. They should know how important it is to take care of their bleeds right away. 
Talking to a Physician 
Next, meet with your child’s hemophilia treatment center (HTC) doctor or nurse to come up with a treatment plan. Talk about your child’s participation in sports and other physical activities. You should sit down with the HTC doctor or nurse before any meetings you have with the school regarding bleeding disorders, because it is good to have an overall understanding of things yourself. 

Talking to the School Staff 
It is important to plan a meeting with the school staff before the school year is in full swing. If you haven’t done this yet, try to organize a meeting as soon as you can; don’t wait for back-to-school night when teachers will be busy meeting with many parents in one evening. 
Contact the school nurse, counselor, or principal to organize the meeting. You should talk about safety precautions, the storage and possible use of treatment in school, and the importance of not singling out or embarrassing your child. People who should be at the meeting include: 
  • You and your child 
  • Primary teacher(s) 
  • Gym teacher 
  • School nurse 
  • An administrator (eg, principal, vice principal) 
  • A previous teacher who has experience with your child’s condition (if available) 
What to Do During the Year 
During the school year, your child needs to be comfortable speaking up if or when bleeds occur, and teachers should be able to recognize bleed symptoms as well. Provide them with a checklist of basic symptoms, as well as an emergency contact list of whom to call if a bleed happens. The same goes for gym class and after school activities—if your child can participate in these activities, the staff should be on the lookout for bleeds or other issues. 
If the bleeding disorder causes absences or missed schoolwork, you, your child, and their teacher(s) should work together to figure out the best way to get caught up. Your child should know that it is okay if their condition prevents them from completing some work on time, but that bleeds are not an excuse to put off responsibilities. 
Working as a Team 
Perhaps the most important thing is to keep in mind that everyone involved is part of a team. You all have the same end goal: to help your child have a productive and enjoyable school year. The school staff may not have much experience with bleeding disorders, which is why it’s important that you all work together throughout the year to ensure your goals are reached. 
For printouts on bleed symptoms, emergency contact information, and other useful resources for the school and your child, visit the NovoSecure™ downloads page. 
This is a sponsored message from Novo Nordisk. 

Learn more at http://www.novonordisk-us.com/. 

Mental Health Challenges in the Bleeding Disorders Community

Laurie Kelley May 15, 2016
Mental Health Awareness Week begins May 15, so it’s a perfect time to think about mental health challenges that individuals with bleeding disorders and their families may often face.

People with chronic illness experience difficulties that can contribute to the development of depression, and people with bleeding disorders such as hemophilia are no exception. As early as childhood, people with hemophilia may have difficulty forming and maintaining friendships due to frequent surgeries and hospital stays, or because they need to avoid activities that other children are free to enjoy. They may appear “different” from their peers because of bruises, needle marks, or swollen joints, which can make them targets for teasing or bullying. As a result, they may struggle with social isolation, body image issues, and chronic pain, which can contribute to depression.

Social isolation and its role in depression can be a problem for people with a bleeding disorder into adulthood. Indeed, lack of social support has been noted as an important risk factor for depression in a study of adult men with hemophilia. In the same study, lack of employment emerged as another important risk factor. With a bleeding disorder, there are additional challenges to finding and keeping a job, such as the need for flexibility, adequate medical insurance benefits, and an employer who supports the rights of someone living with a chronic disorder.

Another mental health challenge for people with a bleeding disorder relates to the use of opioid medications to manage pain associated with joint bleeds and surgeries. Because patients often need effective pain relief, opioids have a distinct place in their treatment. Some individuals may be concerned about addiction. For this reason, it’s important to work with a health care professional with an expertise in pain management when considering opioid treatment.

During Mental Health Awareness week and beyond, patients, parents, and caregivers should be aware of these mental health challenges. Together, we can support each other—and ourselves—throughout our bleeding disorder communities.


To get support, resources, and more to overcome challenges like mental health in your life, reach out to your local community chapter. Eligible individuals can also sign up for the HeroPath™ program and receive a personal mentor/life coach who can help keep you focused on your goals and what’s ahead. Learn more at www.mynovosecure.com.

This is a sponsored message from Novo Nordisk®.
Learn more at http://www.novonordisk.com.

HeroPath™ is a trademark of Likone Corporation.
Novo Nordisk is a registered trademark of Novo Nordisk A/S.

Resources for People with Inhibitors

Laurie Kelley January 4, 2016

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.
For info: www.baxaltahematology.com or www.hematologysupport.com
Baxalta Resource Helpline 888-229-8379
To enroll in CARE: 855-322-6282
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