Helping you thrive through all of life's stages
Life happens, and the IHTC staff is dedicated to guiding you and your family through the various life events you or your child will encounter. Living with hemophilia often renders the need for some advanced preparation or special consideration before things like surgeries, engaging in sports, learning to self-infuse and even going to college. The IHTC is always here to help with questions or concerns.
Surgery and Procedures
There might be times when you or your child might require a surgery or an invasive procedure, whether for a hemophilia-related complication or for an unrelated issue. These procedures may be major or minor. In all cases, IHTC will work with your surgeon to develop a surgery treatment plan to ensure that bleeding issues are managed before, during and after the procedure. The IHTC expert team has worked with patients, families and surgeons for over 30 years and has experience in planning any procedure that is required. Call IHTC as soon as you know the surgery or procedure date so that a surgery plan can be developed.
For dental procedures, close coordination between your/your child's dentist and IHTC is very important, especially if any procedures might be needed. These could include braces, wisdom tooth, or any tooth, extraction.
Visiting the emergency department (ED) can be a scary experience. Not only are you dealing with your medical issues, you may find that you know more about hemophilia than the staff in the ED. If you know what to expect and how to communicate with the ED staff, the experience can be less challenging. You can never plan for emergencies but you can be prepared. IHTC offers resources to help you along the way:
- Access to the IHTC physicians 24/7 to coordinate hemophilia-related issues with local EDs. Prior to going to the ED, contact IHTC and we will contact the ED to discuss your bleeding disorder. Your visit will go more smoothly if IHTC has called before you arrive.
- Travel letter - this is a summary of your diagnosis and treatment plan. It also has our recommendations related to infusion
- Medical identification necklace, bracelet or wallet card - IHTC works with Hemophilia of Indiana (HOII) to provide your identification free of charge. The ID will include your diagnosis and the IHTC phone number. Once contacted, we can discuss your case with the healthcare provider involved in your care
IHTC wants to be your partner to keep you physically active. We know that sports and exercise are important for you or your child's wellness and also for bone and joint health. Your care team is here to help guide you to healthy choices for muscle strengthening, general fitness, physical functioning, and healthy body weight. Contact our team at IHTC before engaging in new or intense physical activities. Our staff can discuss what's appropriate for you or your child, and what protective gear or if infusion therapy might be needed. This is especially important if there are any problem or target joints. These topics are routinely discussed during your comprehensive visit or you can call to talk to our physical therapist any time.
You might be interested in reviewing an educational booklet produced by the National Hemophilia Foundation and called "Playing it Safe" The booklet provides an overview of various sports and activities for all stages of life and addresses how to participate in physical activity safely.
Children & Teens
Early School Years
In your child’s early years , you, as a parent, will find yourself learning every day about hemophilia and the care required. You will also need to educate all those who will be an important part of your child's life. This includes daycare or preschool personnel, school staff, family members, and the close network of people your child will interact with.
Your care team at IHTC is experienced in educating you or anyone else who will be caring for your child. This could include relatives, daycare providers, teachers, and coaches, among others. The goal for all of our children with hemophilia is to have a successful experience, both academically and physically. Ask your care team for advice and resources to help you, as parent, be well-equipped to be the best advocate for your child when young, and to raise a child who is also a good advocate for themselves. IHTC has child life specialists, career/school counselors, social workers, nurses and many other staff members who are focused on allowing your child to live a normal life.
The IHTC and the Partners in Bleeding Disorders Education Program have developed free online learning modules and videos to assist the school staff in coordinating care for the student with a bleeding disorder. These modules can also be completed by school administrators, teachers, and coaches to promote a safe and positive learning environment for the student, and improve ongoing communication between the school, the parent, and the HTC.
Child Life Services
Clinic appointments can be stressful for you and your children. Child Life Specialists assist children and families to reduce stress and optimize their clinic visit.
Child Life Specialists provide age appropriate information to answer each child’s questions. They also provide support and distraction to reduce pain and anxiety related to procedures such as intravenous line (IV) starts and blood draws.
The Child Life Specialist is available at the IHTC during regularly scheduled clinics at IHTC and outreach locations. They are also available anytime during the week for questions unique to your child and situation. The child life specialist is involved in planning child-focused events such as camp to be sure we are including and educating children about bleeding disorders.
Being part of the community of people with bleeding conditions and their families is an important aspect of learning from other people's experiences, feeling connected, and less isolated. IHTC is very active in developing that sense of community and organizes a number of camps for children of different ages. Many children with a bleeding disorder may not know anyone else who is their age with hemophilia. Camps provide an opportunity to meet others with similar life experiences. It is also an opportunity for your child to learn about caring for their bleeding disorder from the IHTC team.
Camp Brave Eagle
Camp Brave Eagle is Indiana’s summer camp for children with bleeding conditions. The week-long camp is open to all Indiana children with bleeding conditions, as well as their siblings, ages 7–16.
IHTC is aware that many of our children are unable to attend a traditional summer camp due to their medical needs. The aim of this camp is to provide children a traditional summer camp experience in a safe and supervised medical environment. Besides providing lots of fun, Camp Brave Eagle also encourages self–sufficiency, builds confidence, increases self–esteem and promotes a positive outlook on life. One of the major focuses of camp is teaching your child self-infusion to begin their independence in living with hemophilia. Further, the camp helps to strengthen the sense of community among young Hoosiers with bleeding conditions and their families.
The Indiana Hemophilia & Thrombosis Center Inc. (IHTC) partners with Hemophilia of Indiana Inc. (HoII) in hosting this camp. If you would like more information about Camp Brave Eagle, please visit http://www.campbraveeagle.org or call the IHTC at 317.871.0000 or HoII at 317.570.0039 or toll free at 1.800.241.2873.
Doug Thompson Leadership Camp
The Doug Thompson Teen Leadership Program was created in memory of Doug Thompson. Doug had a passion for helping teens and worked with them during the most impressionable years of their lives. The program provides teens with bleeding conditions an opportunity to develop and refine their life and leadership skills while participating in an adventure camp experience. Teen camp teaches young men how to mentally and physically prepare for independence related to medical needs.
At IHTC we strongly believe that teaching children self-infusion is one of the best ways to give them control of their bleeding disorder. This will allow quick treatment of bleeding and prophylaxis success. We realize that this process may happen quickly for some children and take longer for others. IHTC will work with you to determine if your child is ready for this task. Infusion training takes place in the clinic, camp or in the home. We will also provide you with the tools and support to continue or begin training at home. This process is paced in a way that respects your child's abilities and grows their confidence and skill. It is an important part of the child transitioning to independence in taking care of themselves.
Transition to Independence
When your child turns 18, he or she is technically an adult and should take over adult responsibilities. We are aware that every child is different and what is easy for some may be difficult for others . IHTC has a transition program that starts this process long before their 18th birthday. The IHTC transition program starts in their early teen years and progresses even after their 18th birthday. We provide your child with the tools they need and provide you with ways to move from a caregiver to a support person. It’s important for both of you to start preparing for the transition to independent living early. Your teen will be encouraged to take the lead in ordering factor, communicating independently with treatment team, navigating an after-hours emergency, travel planning, and discussing their bleeding disorder with others. To assist families in the transition process from pediatric to adult healthcare, the IHTC has developed a program called 18 Steps to 18. This program identifies the key tasks for adolescents to master to achieve independence. The program is designed for participation over several years, thereby providing sufficient time to master each goal. Mastering the 18 Steps ensures that your child is adequately prepared to take ownership of their healthcare.
Empowering Development and Growth through Education (EDGE)
- The IHTC EDGE program was developed with the help of our patient advisory board and teens. The goal of EDGE is to assist pediatric bleeding disorder patients with developing the knowledge, skills and confidence to ensure independent self-care and a successful transition into adulthood. Since no two patients are alike, we have developed a series of programs focused on this goal.
- Transition Needs Assessment (TNA)-Part of our electronic Medical Record (EMR) used to track each patient's progress towards independence. The TNA allows us to track specific transition knowledge and skill-based milestones and evaluate each person’s progress. This is started in the early teen years with the goal of identifying and correcting gaps early in the process and better prepare the child and parent(s) to gain independence over the years.
- The Annual High School Survival Retreat was held for 8th/9th graders with hemophilia and their parents. Topics included medical transition and healthy independence, managing stress, and surviving the rigors of high school.
- The Transition High Risk Screening subcommittee holds ongoing bi-monthly meetings to identify children who may have a difficult time transitioning to independent care in the future.
Education Support & Career Counseling
The IHTC Career Counselors are available to patients of all ages. The goal of the career counselor is to assist with success in school, college and the work place. IHTC wants every person to achieve their full potential despite the fact that they have a bleeding disorder. The career counselor is an expert on the impact caused by hemophilia and all of the services and supports needed for success. Services include the following:
Academic and School Support
- Assistance with school plans such as Section 504, IEP
- Credit review during high school to ensure graduation
- Assistance accessing school programs following missed days due to bleeding issues
LEARN MORE ABOUT IHTC'S ACADEMIC AND SCHOOL SUPPORT
Assistance with College
- General college applications
- Financial Aid and scholarship application
- Procurement of recommendation letters
LEARN MORE ABOUT HOW IHTC CAN ASSIST WITH FINANCIAL AID PLANNING
- Application for vocational rehab
- Assistance with developing resume
LEARN MORE ABOUT IHTC'S CAREER ASSISTANCE
Personality and Career Inventory
- Administration and analysis of results
LEARN MORE ABOUT IHTC'S PERSONALITY AND CAREER INVENTORY
In addition to the above, as you start thinking about attending university/college, there are a number of consideration to take into account when selecting a university. The IHTC Career Counselor has guided a large number of young adults with hemophilia as they navigate the ins-and-outs of being a college student, such as your university’s location and its proximity to your (or another) hemophilia and thrombosis center, storage needs for factor and medications, discussions with professors about your medical condition, roommate/classmate disclosure, and insurance considerations.
IHTC is committed to your and your child's success. Make sure to schedule an appointment with an IHTC Career Counselor to guide you with any of the topics listed above.
Your care at the IHTC
As an adult with hemophilia, you have learned to independently manage your medical condition. There are many issues to manage as you live your life each day. IHTC has many members of our healthcare team trained in assisting with life issues/changes as they occur.
Disclosure is a term used to describe how you talk to others about your bleeding disorder. Sometimes it is hard to know who, when and how to tell others about hemophilia. This is a very personal decision. Some feel very comfortable talking about hemophilia and some people are very private and prefer to not disclose any details. For example
- When do you discuss this with someone you’re dating?
- Do you need to tell your roommate?
- Is it important for your employer or co-workers to know?
- How do you explain hemophilia to your children, extended family, in-laws?
- And many more…
IHTC can partner with you to provide resources and education when questions arise. If you have questions please contact our social work team.
Entering the workplace
Similar to the stage of choosing a career and a university, you will have to evaluate many considerations as you prepare to enter the workplace. These include things like health insurance, disability rights, talking to employers and co-workers, physical demands and risks of the job, travel requirements, possible need to relocate, and the impact on where you receive care. The IHTC career counselors and social workers are able and ready to assist you with these questions and decisions.
Starting a family is an important decision. If you are a man with hemophilia, all of your daughters will carry the hemophilia gene and none of your sons will have hemophilia or pass it on to their children. If you are a carrier, there is a 50% chance your son will have hemophilia or your daughter is a carrier. Your partner may not be familiar with hemophilia and may have questions. Consultation with IHTC through the family planning process will help you and your partner to be better informed. Our genetics counseling team is available for any questions related to prenatal diagnosis or genetic testing for carrier.
LEARN MORE ABOUT FAMILY PLANNING
ADULTS OVER 60
As you get older, It is important to understand how hemophilia impacts your general health. Medications and procedures used for screening and prevention may come with a bleeding risk. IHTC will work with your primary care doctor or specialist to determine if the risk of bleeding outweighs the health benefit from the treatment. Below are a few examples:
New medications or herbs
There are certain medicines, supplements and herbs that can increase your risk for bleeding. Example: Doctors may recommend starting an aspirin as people age, depending on certain medical conditions
Screenings/procedures that may require pre-treatment
- Tooth removal
The same factors that contribute to heart disease risk in the general population also impact the aging people with hemophilia. Older people with hemophilia may be at higher risk for developing metabolic syndrome (insulin resistance syndrome) which has a long-term risk of heart disease, stroke, and diabetes. Many people with hemophilia are also overweight and inactive due to joint issues. High blood pressure can be a concern due to the risk of a head bleed.
Whatever is your risk of developing heart issues, the IHTC team will monitor these during your comprehensive visit. We will check your weight, blood pressure, and laboratory studies. Our dietician can work with you on weight loss. Our physical therapist can develop an exercise program that can work for your lifestyle. We will work with your primary care physician to properly manage your hypertension.
LEARN HOW HEMOPHILIA IMPACTS WOMEN