The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Lymphangiomatosis (Podcast)
In 2009, Diane Bomberg’s son, Erik, was a perfectly healthy preschooler when one day he experienced lower back pain so intense that he could not sit or stand. Diane immediately took him to their family doctor, where x-rays showed that something was not right with his femur. Their family physician sent them to an orthopedic specialist, who after reviewing test results, concluded that it was most likely a bone infection or leukemia. After spending weeks in the hospital, the pathologist was finally able to determine that Erik had kaposiform lymphangiomatosis (KLA). Lymphangiomatosis is a rare disease where benign tumors can form in an individual’s lymphatic system. As Diane came to find out, very few doctors know much about this rare disease. Fortunately, the family found the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), which connected them to experienced doctors and specialists.
There is no curative treatment for lymphangiomatosis. Symptomatic treatments are available, and everyone can present with different symptoms. Fortunately, Erik has done very well with his treatments and, thanks to the opportunity to travel to see specialists, he is a thriving teen.
Living with a rare disease impacts individuals and their family/caregivers, both physically and mentally. This podcast will share insights and perspectives directly from Diane Bomberg and provide strategies that the interprofessional health care team can utilize to better support those impacted by rare diseases such as lymphangiomatosis.
This activity is provided by Optum Health Education and UnitedHealthcare.
No commercial support was received for this activity.
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This activity is designed to meet the educational needs of case managers, counselors, nurses, nurse practitioners, pharmacists, pharmacy technicians, physicians, PAs, psychologists, social workers, therapists and other health care professionals who care for individuals with rare diseases.
At the end of this educational activity, participants should be able to:
- Describe the diagnostic journey for individuals affected by lymphangiomatosis.
- Discuss the challenges and barriers in the diagnosis and treatment of lymphangiomatosis as well as the associated physical and mental health issues.
- Engage individual(s) and caregiver(s) in discussions and shared decision-making.
For more information on kaposiform lymphangiomatosis (KLA) and other lymphatic conditions, please also view the accompanying webcast. During the webcast, Dr. Denise Adams will explore recent advances in the diagnosis and treatment of KLA and other lymphatic conditions, including current clinical trials.
Click here to access the webcast, The Diagnostic Odyssey for Individuals With Rare Diseases: Kaposiform Lymphangiomatosis and Other Lymphatic Conditions.
Senior Training Process Analyst
About the speaker
Diane Bomberg was born and raised in Lincoln, Nebraska. She graduated with a biology degree and worked in the pharmaceutical industry for 17 years before transitioning to the training department at Nelnet. Diane’s professional life consistently included working and interacting with people, researching problems and networking. Unbeknownst to her, her professional life helped develop the skill set she needed to raise and care for a child with special needs.
Sarah Chart, RN
Optum Health Education
Robin K. Blitz, MD
Senior Medical Director
Family Engagement Center / Special Needs Initiative / Complex Health Solutions
Rebecca Gleason, RN, CCM
Optum Health Education
Disclosures of relevant financial relationships
In accordance with the Accreditation Council for Continuing Medical Education's (ACCME) Standards for Integrity and Independence in Accredited Continuing Education, Optum Health Education (OHE) requires all those in control of educational content to disclose their financial relationships with ineligible companies within the prior 24 months. Ineligible companies are defined by the ACCME as companies whose primary business is producing, marketing, selling, re-selling, or distributing health care products used by or on patients. Individuals must disclose all financial relationships, regardless of the amount, with ineligible companies and regardless of their view of the relevance of the relationship to the education. OHE ensures that the content is independent of commercial bias.
The presenter and planners have no financial relationships to disclose.
Method for calculating CE credit
CE credit was calculated by the complexity of content.
In support of improving patient care, this activity has been planned and implemented by Optum Health Education and UnitedHealthcare. Optum Health Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE) and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team.
Credit designation statements
This activity was planned by and for the health care team, and learners will receive 0.75 Interprofessional Continuing Education (IPCE) credits for learning and change.
The participant will be awarded up to 0.75 contact hour(s) of credit for attendance and completion of supplemental materials.
The American Academy of Nurse Practitioners Certification Program (AANPCP) accepts credit from organizations accredited by the ACCME and ANCC.
This activity is approved for 0.75 contact hour ([0.075] CEU) in states that recognize ACPE.
Attending the full program will earn 0.75 contact hour.
Unique Activity Number(s): JA0007123-9999-22-172-H01-P/T
Optum Health Education designates this enduring activity for a maximum of 0.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
The American Academy of Physician Assistants (AAPA) accepts credit from organizations accredited by the ACCME.
The Commission for Case Manager Certification has approved this program for a maximum of 0.75 clock hours for Certified Case Managers (CCM).
Optum Health Education is approved by the American Psychological Association (APA) to offer continuing education for psychologists. Optum Health Education maintains responsibility for this program. 0.75 CE hour.
As a Jointly Accredited Organization, Optum Health Education is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. Optum Health Education maintains responsibility for this course. Social workers completing this course receive 0.75 enduring continuing education credits.
Counselors and/or marriage and family therapists
CA: The Board of Behavioral Sciences has deferred CE course approvals to APA and ASWB for its licensees. See those approvals under Psychologists and Social Workers.
Other States: If your state is not specifically listed, nearly all state Counselor and MFT boards accept either APA or ASWB approval, or are reciprocal with other state licensing board approvals, such as those listed below. Check with your board to be sure.
A certificate of attendance will be provided to learners upon completion of activity requirements, enabling participants to register with licensing boards or associations that have not been preapproved for credits. To apply for credit types not listed above, participants should use the procedure established by the specific organization from which they wish to obtain credit.
- 0.75 ACPE - Pharmacists
- 0.75 ACPE - Pharmacy Technicians
- 0.75 AMA - Physicians
- 0.75 ANCC - Nurses
- 0.75 APA - Psychologists
- 0.75 Attendance - General Attendance
- 0.75 CCMC - General - Case Managers
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