PTSD in Chronic Conditions

During this session, you will gain a deeper understanding of post-traumatic stress disorder (PTSD) and how it can manifest for a person with a bleeding disorder or a family member. We will discuss how PTSD can affect your personal and professional relationships and ways you can seek both medical and non-medical help.

Navigating Virtual School At Home

During COVID-19, many children are now figuring out how to learn online through virtual schooling. Many parents and caregivers are now tasked with balancing work, online school, and child care. This session will discuss strategies, tips, and stories of how to navigate the online school and virtual learning with a child who has a bleeding disorder.

Movement and Mobility

Throughout the different stages of living with a bleeding disorder, we can be or become immobile at one point or another. During this session, you will learn movement and meditation techniques that alleviate stress and anxiety that come along with a bleeding disorder.

Parent Partnership & Mental Health

As a parent or primary caregiver of a child with a bleeding disorder, it's easy to put all of your focus into managing your child's care. Especially during this time, it is important to nurture your relationship with your partner - and to make your mental and emotional health a priority. This session will impart some personal experiences, as well as strategies and tips on how to balance your roles in your partnership and designate time to nurture your mental health and well-being.

Learning to Let Go: Fostering Independence

Let’s face it, adolescence is a challenging time even under the best of circumstances. As parents of teens with hemophilia and an inhibitor, one of those biggest challenges, preparing to let go, can be especially difficult. As children grow into their teen years, parents undergo a transition of their own, from advocates and fierce protectors to ones willing, in fits and starts, to take a step back. In this webinar, a social worker will join a teenager, young adult and mom to discuss this evolution and techniques for engendering independence.

Is Hemophilia a Secret? Disclosure in the 21st Century

The issue of disclosure is not always as straightforward as it might seem. The question of when and how to talk about one's bleeding disorder can be complicated and will arise many times in a person’s life. Watch the online webinar as social worker Cathy Tiggs and two individuals affected by hemophilia and inhibitors discuss the social, personal and professional implications of disclosure in the digital age and social media.

Presenters/Panelists:

Getting Unstuck: Overcoming Roadblocks to Intimacy and Relationships

Intimacy and relationships can have special dynamics for people with bleeding disorders and for caregivers of a child with a bleeding disorder. This module explores ways to strengthen physical, emotional, social, intellectual and spiritual intimacy through targeted communication and behaviors to enhance relationships. It is ideal for those interested in attending individually or as a couple to learn tools for cultivating a rewarding, enjoyable connection with their partner.

Speakers:

Is Hemophilia a Secret? Disclosure in a World Filled with Technology

Whether within friendships, romantic relationships, at school or in the workplace, an adult with hemophilia will confront the question of disclosing their bleeding disorder status many times over. Join us to learn techniques that will help you negotiate this process in the age of digital and social media.


Transcription of "Is Hemophilia a Secret? Disclosure in a World Filled with Technology"

Skills for Coping with Anxiety and Depression

Life with a chronic condition can be challenging at times, adding stress to the lives of people with bleeding disorders and their caregivers.  The Hemophilia Experiences, Results and Opportunities (HERO) study, conducted by Novo Nordisk, found that while many people experience anxiety when adapting to life with a bleeding disorder, this can be reduced when quality information, advice and support networks are available.  Mental health and physical health are closely related, and this presentation will discuss how stress can affect life, how to know when life is out of balance, and what resou

A Moment of Reflection

This recorded session was a part of the 2020 virtual Rare Bleeding Disorders Conference. This mid-week boost will explain the practice of meditation, with reflective meditation exercises woven throughout the presentation.

Speaker:  Jhon Velasco, MA, RYT300

Marijuana: Breaking it Down, the Good, the Bad, and the Consumption

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Alfredo A. Narvaez, Jr., MSW, LMSW
Social Worker, Louisiana Comprehensive Hemophilia Center
Tulane University Medical Center

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

Prevalence of Depression and/or Anxiety in Children Seen at the Arizona HTC’

*ASWB

Moderators:

Amy Schadewald, MSW, LICSW, ACM
Clinical Social Worker, M Health Fairview Center for Bleeding and Clotting Disorders

Connie Thibodeaux, MSW, LCSW, BAC
Hemophilia Social Work Coordinator
Louisiana Center for Bleeding & Clotting Disorders
Tulane University School of Medicine / Deming Department of Medicine

Speaker:

Ethics: Blurred Boundaries

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center

Speaker:

Alana Brunner, LCPC, NCC, CCMHC
Mental Health Therapist
St. Luke’s Psychiatric Wellness

By the end of this session, the participant should be better able to: