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28 Gynecology inBladder Exstrophy
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Advocacy fortheExstrophy Community:
Empowering andEncouraging
29
thePatient andFamily
PamelaArtigas andEmilyHaddad
Introduction
The bladder-exstrophy-epispadias complex (BEEC) is a group of rare congenital
diagnoses that present a multitude of medical and psychosocial challenges to the
individual and their family. This condition is seen worldwide with a frequency of
2.2 cases in 100,000in the most prevalent form of the condition, bladder exstrophy
[1]. Individuals living with epispadias, bladder exstrophy, and cloacal exstrophy are
at risk for being isolated and managing their medical and social challenges without
support. Like all chronic conditions, living with BEEC without proper support can
lead to mental distress, anxiety, depression, and other mental health conditions
[2–7]. Due to this condition being rare, often hidden, and invisible, these individuals
and their families may face stigma and shame as a result. To mitigate these risks,
stakeholders (affected individuals and their families, the medical community specializing in these conditions, and the advocacy community) have prioritized several
avenues of support. These advocacy efforts include support groups (local and international), educational platforms, summer camps, family-oriented events, international partnerships and workshops, interventions for school success and access, and
advocacy for vulnerable individuals around the world to access suitable care [8].
The authors have no nancial or non-nancial interests to disclose.
P. Artigas (*) · E. Haddad
Association for the Bladder Exstrophy Community (A-BE-C), Vero Beach, FL, USA
e-mail: pamela.artigas@bladderexstrophy.com
© The Author(s), under exclusive license to Springer Nature
Switzerland AG 2025
A. R. Shukla, R. S. Joshi (eds.), Bladder Exstrophy and Epispadias,
https://doi.org/10.1007/978-3-031-91238-2_29
449
450
P. Artigas and E. Haddad
Patient Advocacy
Given the challenges posed to the chronically ill and the most vulnerable, patient
advocacy has become understood as the act of supporting and promoting the rights
and safety of a patient or a patient group [9]. Advocacy can be informal and be a
service delivered by a family, friend, or representatives from an organization. Patient
advocacy organizations provide a sense of community as well as education,
resources, and support. In a more formal sense, a patient advocate, nurse, or social
worker may be assigned by an institution to advocate on behalf of a patient and their
family. The concept of advocacy is contingent on the need and vulnerability of a
person to have social support in their time of medical decision-making, medical
intervention, and illness. For those with BEEC, physicians, nurses, social workers,
family members, friends, and other community groups may serve as advocates for
the individual through their lifespan. The goal of advocacy is to respect the integrity
of the individual with BEEC and to empower and equip the individual with selfadvocacy skills (including collaboration with allies) to manage their health and
well-being with optimal independence and self-efcacy.
The Association for the Bladder Exstrophy Community (A-BE-C) is the only
non-prot dedicated exclusively to advocating for those with BEEC around the
world, established in 1998. The A-BE-C, now based in Florida, USA, in partnership
with medical professionals, patient advocates, and patient families, addresses health
inequities, advocating for the patient and family within the healthcare system.
Additionally, the A-BE-C provides avenues for education, emotional coping, and
peer support. These interventions are ultimately to promote self-advocacy and
patient dignity. The A-BE-C is committed to ensuring that all affected by exstrophy
can, in the words of the organization, “realize their greatest life purpose and potential” [10] (Fig.29.1).
Advocates and Allies
Researchers
BEEC
STAKEHOLDERS
ABEC
Psychosocial Partners
Fig. 29.1 Stakeholders engaged in advocacy for BEEC
BEEC Patient
Caregivers & Families
Medical Providers
29 Advocacy for the Exstrophy Community: Empowering and Encouraging…
451
Advocacy Needs Along theLifespan
Upon diagnosis, education and access to care are critical. Some families in middleincome or high-income countries may receive a prenatal diagnosis, but many parents around the world rst learn of BEEC soon after delivery and without any
indication during pregnancy. The family is then catapulted into a world of complex,
lifelong health conditions where accessing the best care can be a challenge.
Importantly, the cultural beliefs about disability and difference in the community to
which the child is born have major implications on acceptance and stigmatization.
In communities where there is limited health literacy and limited resources, parents
of children with BEEC may be encouraged to abandon their child and not welcome
the child into the community. This challenge has massive implications for the
adjustment of the parents of a child with BEEC.Parent and child bonding may also
be interrupted by extended hospitalization, unplanned surgeries, and the shock and
trauma of the diagnosis. Parents may feel powerless and overwhelmed while also
coping with the reality that BEEC is a chronic and lifelong condition. Caregivers are
required to evolve from novices to experts on BEEC while advocating for the child
in their community and the medical setting [11].
Preparing for the developmental milestone of accessing education/school can
trigger more challenges. Many children with BEEC will enter school incontinent,
which is a signicant concern for families. Communication with the child’s teachers
and school is critical to ensure the child’s rights and accommodations are addressed
and respected. Condentiality and independence become more vital as teens engage
in more intimate settings (athletic changing rooms, unsupervised social activities),
which may require changing in front of peers. The initiation of romantic relationships and investment in peer relations during this time period have the potential to
lead to episodes that may impact the individual’s self-image and mental health.
Transitioning to adulthood has its own set of challenges for the individual with
BEEC and their family. The importance of access to education throughout childhood becomes apparent as the adult seeks employment and is motivated for increased
independence. Young adults will now be responsible for their care and must understand their childhood health history, how to access care, and avenues for self-advocacy. Furthermore, many adults consider sexual health issues such as intimacy,
intercourse, and procreation, which may be challenged by the implications of their
BEEC diagnosis [12, 13]. Now that those with BEEC are living longer, clinicians
must educate older adults on special needs considerations to maintain a healthy
quality of life.
Advocacy Interventions fortheBEEC Community
Advocating for the BEEC community includes protecting, supporting, and promoting their rights to health, education, and justice. There are many tools or interventions that can be utilized, but they must be tailored to each individual and their
family. This patient-centered approach is vital to respect the individual with BEEC
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P. Artigas and E. Haddad
PATIENT-
CENTERED
HEALTH
INEQUITIES
• International
Collaborations
• Engagement of Family
and Friends
• Culturally Appropriate
• Patient-Directed
Research
ADVOCACY
INTERVENTIONS
PSYCHOSOCIAL
NEEDS
• Counseling
• Peer Support
• Summer Camps
• Internet-based
Platforms
Fig. 29.2 Advocacy interventions for the BEEC community
FOR THE BEEC
COMMUNITY
MEDICAL CARE
• Appropriate Surgery
• Follow-up Care &
Evaluation
• Medical Education
• Adult Providers
• Sexual Health
EDUCATION
• Access
• Accommodations
• Rights and Legislation
EMPLOYMENT
• Access
• Accommodations
• Rights and Legislation
and their culture, patient-family values, access to care and resources, and individual
uniqueness. Peer support, local support groups, summer camps for children, and
annual conferences are several interventions that may enhance quality of life,
increase health literacy, and reduce isolation for the affected person and their family.
These are psychosocial tools that may be in addition to or supplement other more
individualized approaches such as behavioral health counseling.
Educational advocacy through legislation/public policy and advocating for specic individuals’ accommodations in their school setting is imperative for this population’s academic success. International surgical workshops and collaborations for
BEEC address global health inequities by raising awareness and enhancing access
to optimal interdisciplinary care (Fig.29.2).
29 Advocacy for the Exstrophy Community: Empowering and Encouraging…
Image 29.1 Teen panel at
Annual A-BE-C
conference
453
Peer Support
It is understood that individuals with chronic illnesses benet from being introduced to one another to create a sense of community and reduce feelings of isolation
[14]. Mentorship and peer-to-peer consultation may enhance the individual’s selfdetermination, self-directed advocacy, and motivation to seek medical care and pursue their academic, career, and social goals. These peer support options are available
locally, nationally, and internationally within the BEEC community. The use of
internet-based communication has undoubtedly increased access and networking.
There are many informal social media support groups that are age and disease specic and directed to BEEC patients and families. A-BE-C directed events and annual
conferences, hospital-oriented groups, and summer camps provide opportunities for
those with BEEC and their families to meet one another (Image 29.1).
Local Support Groups
Hospital institutions have begun prioritizing peer support and patient-family advisory committees to extrapolate the strength and benet of the community itself as a
valuable partner. These formal support groups and activities allow families to share
their knowledge and experience, and provide emotional support around various
challenges faced (medical decision-making, coping with major surgeries, disclosure, navigating the school setting, etc.) [15]. Furthermore, local support groups are
also created by the patients and families themselves as separate entities that act as
informal support networks. Parent-parent, parent-affected adult, and teen-affected
adult are a few variations of benecial support arrangements that can have lasting
effects on a family’s experience navigating the management of BEEC.These support networks exist in many countries throughout the world (see Fig.29.3) and are
454
Fig. 29.3 Map of support groups for BEEC
P. Artigas and E. Haddad
primarily web-based. However, often these groups have in-person meetings when
possible. The majority of these groups are also integrated into the A-BE-C global
network, and communication is transferred back and forth to share ideas, activities,
care opportunities, and emotional support.
Summer Camps forYouth
The opportunity to meet others with BEEC and similar conditions may alter a
child’s perspective and ease a caregiver’s anxiety and fears. The ability to see an
adult or older teen with BEEC thriving in their psychological health, academics,
career, intimate relationships, athletics/sports, etc. is a major benet of peer support.
This support can be accessed via summer camps like Youth Rally (www.youthrally.
org) and Ostomy Canada Youth Camp (www.ostomycanada.ca), which are available
to pre-teens and teens regardless of nancial status, citizenship, etc. [16, 17].
Counselors with similar conditions provide guidance, support, encouragement,
mentorship, and an adult example of resilience and determination. In turn, the motivation to become a counselor and explore altruism in adulthood for the younger
generation may motivate the younger, struggling, and insecure child with BEEC to
improve their independence and social skills. The community-oriented aspect of
these camps encourages compassion, unity, and togetherness, thus reducing isolation and loneliness. The therapeutic aspect of summer camp can be easily promoted
by medical teams and advocates for the BEEC community. Local summer camps,
teen retreats, or day camp opportunities for chronic illnesses in general or provided
by your urology team/hospital also provide opportunities for community, peer support, and informal education.
29 Advocacy for the Exstrophy Community: Empowering and Encouraging…
455
A-BE-C Initiatives andOpportunities
Collaborating with a team of dedicated parents and patients, international exstrophy
experts, and dedicated pediatric and adult urologists, the A-BE-C supports all those
affected by BEEC.A-BE-C provides parents, caregivers, and persons living with
bladder exstrophy tools and resources to help manage their condition throughout
their lifetime by providing awareness, education, advocacy, and ongoing support to
help navigate the medical and psychosocial issues.
Centers ofExcellence
The diagnosis of bladder exstrophy, cloacal exstrophy, and epispadias can be isolating and overwhelming for caregivers. The ability to nd specialized care quickly
and easily is important for these rare conditions. Many primary care physicians,
gynecologists, and obstetricians have never heard of the BEEC diagnoses. Awareness
and education can help bridge the gap between provider and patient, removing barriers of isolation and fear. A-BE-C, after consultations with leading BEEC experts
volunteering on the organization’s advisory committee, established a Centers of
Excellence program in 2018 to identify comprehensive care centers dedicated to
BEEC.BEEC programs based at children’s hospitals throughout the world apply to
be considered a Center of Excellence and are required to meet criteria exemplifying
their experience, commitment, and interdisciplinary programming. A peer review
selection process ensues where the BEEC Advisory Committee reviews and selects
applications for designation.The availability of designated Centers of Excellence,
which are shared on the organization’s webpage, then supports caregivers of children born with BEEC in nding accurate information and expert treatment [10].
Medical Advisory Council
Families have support and guidance from many of the world’s experts in the treatment and management of BEEC through A-BE-C’s dedicated medical advisory
council, which includes surgeons, nurses, and psychosocial specialists. These specialists collaborate with A-BE-C to promote education about living with BEEC
through workshops, educational webinars, and patient and physician panels. These
medical advisory council members collaborate with A-BE-C to create free online
resources such as downloadable handouts, videos, and books related to BEEC [10].
US-Based Initiatives: Policy andLegislation
A-BE-C is 1 of 30 patient and physician advocacy organizations that work to
advance awareness and education about bladder health through the Urology Care
Foundation Bladder Health Alliance [18]. Recognizing that millions of Americans
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P. Artigas and E. Haddad
suffer from a variety of bladder health conditions such as BEEC, the alliance secured
House and Senate resolutions supporting the designation of November as “National
Bladder Health Month” in the United States. Resolution 604 recognizes that those
affected by bladder conditions have a signicant impact on their health and quality
of the life, which could lead to depression, social isolation, and loss of self-esteem,
and supports the critically underfunded need for medical and behavioral research to
better understand and treat bladder conditions [19].
Annual Conferences
For one weekend every summer (month of June or July), A-BE-C, in partnership
with Center of Excellence designees, joins families and healthcare providers to
offer an opportunity to share experiences, knowledge, and support around
BEEC.Each year’s conference strives to unite families to build community and
provide the latest medical information. As the conference is held in North America,
most attendees come from all over the United States and Canada. However, as the
A-BE-C community is global, all of those affected by BEEC around the globe are
welcome and encouraged to attend. These conferences allow for a special opportunity for individuals with BEEC to share their stories and meet specialized medical
professionals who can guide them on their exstrophy journey (Image 29.2).
Image 29.2 Annual A-BE-C conference
k
29 Advocacy for the Exstrophy Community: Empowering and Encouraging…
457
Global Health Inequities
Pediatric urology is still in its early infancy as an independent specialty in many areas
of the world. The need for fellowship-trained pediatric urologists working exclusively
for children is paradoxically most acute where the need is the greatest. This decit has
resulted in a volume of children worldwide in urgent need of complex surgical reconstruction that would lead to quantiable improvements in health, productivity, reduced
healthcare expenditure, and quality of life. Providing points of access to quality
healthcare from centers that are demographically large but decient in pediatric surgical expertise remains a massive unmet need. To complicate matters, very few surgeons
worldwide are qualied to treat children with BEEC.As a result, these children are
often abandoned, left untreated, or multiple attempted repairs are unsuccessful.
Global Health Initiatives
A-BE-C volunteers, global partners, and its medical advisory council members
facilitate care and consultation to reduce gaps in global health inequities and
enhance outcomes. The A-BE-C prioritizes the following global health initiatives to
address these challenges (Fig.29.4).
The US-India Bladder Exstrophy Collaborative commenced in 2009 as a consortium bringing together leading US and Canada-based children’s hospitals partnering with one of the largest public hospitals in Asia—the Civil Hospital-Ahmedabad
that serves as the tertiary safety-net hospital for a state with a population of 60million [20]. [This collaboration is detailed elsewhere in this compendium.] Patients
from the region with BEEC receive the full spectrum of care with international and
Indian surgeons during this workshop and are provided education, peer support, and
Fig. 29.4 Priorities of global health initiatives
• Child abandonment
• Urinary and fecal incontinence
• Repeat urinary tract infections
• Kidney damage/failure
• Repeat surgeries
• Lengthy hospital stays
• Absence from school and wor
• Social Discrimination
• Mental health challenges