Educación y Apoyo al Paciente

Historias de familia

Folletos

Este Care Notebook está diseñado para ayudar a organizar la información en un solo lugar para ayudar a las familias., cuidadores y proveedores. Está disponible en inglés y español..

Preparación para emergencias

Acerca de PA

Acidemia propiónica Presentación de Claudia Soler-Alfonso en español para PA Foundation (pdf)
- Vídeo – “Acidemia Propionica – Lo básico, el tratamiento, y las nuevas terapias” by Claudia Soler-Alfonso, Maryland, FACMG
  Pediatra – genetista clínico. Especialista en Errores Innatos del Metabolismo
Acerca de las herramientas PA/MMA que permiten el aprendizaje metabólico de los padres (TEMPLO) Guías de Nutricia
- Inglés
- español
- Francés
- Arábica

Páginas de actividades de los niños

Glosario

The PA Family

Caring for those with Propionic Acidemia can be devastating; difficulties may include problems in understanding the disease, financial costs of the disorder and/or loss of income, finding resources to meet medical and family needs, and emotional and physical stress.

When PA strikes, the entire family feels the impact.

Parents first cope with feelings of disbelief, hurt, and anger, which soon evolve into the daily physical and emotional stresses of caring for a very fragile child.
Parent work schedules may have to be adjusted or other arrangements need to be made for childcare at home and in the hospital.
Siblings often feel anger and resentment as busy and tired parents have less time for them. They also may have mixed feelings when their sister or brother is in the hospital and they are missing a parent or staying with friends or relatives. ” It’s hard when Bella vomits, because my mom is stressed out very much. It’s hard when Bella is in the hospital because my mom has to stay with her and I miss them very much. I love Bella and I want her to be always healthy.” – Luke 8, brother of Isabella 2
Infections, such as a common cold, can result in a hospital visit. Every unscheduled hospital stay is terrifying as the outcome could mean organ damage or death. The family has to make decisions on which holidays and family events are “safe” to bring their child.
Family outings and vacations are affected by the PA child’s condition and special precautions may need to be taken.
The family kitchen soon becomes a laboratory for precisely weighing and measuring their medically prescribed low protein formula.
The daily schedule is focused around the feeding schedule.
Financial strains are felt by the family, because of extensive medical care and therapies.

Parents need to learn what they need to know about PA, medical insurance, state programs for respite/nursing, school, and transition. This is not an easy process.

If you are close to a family with PA, there are things you can do to help.

You can make sure you wash your hands or use hand sanitizer every time you are near the child. Make sure the family knows if you are sick before they attend an event.
You can bring or send meals to the family.
You can help with transportation of a sibling or watching the sibling.
You can visit the family when the child is hospitalized
You can call to check in with the family.

COVID-19 y PA

PAF-19 COVID información
Cuestionario COVID-19 – Fundación de Acidemia propiónica, trabajando contigo, puede ayudar a combatir este virus. Si ha tenido COVID-19 o no, puede ayudar a los investigadores a comprender la experiencia humana completa. Eres la mejor fuente de información vital. El poder de la comunidad para unirse para resolver grandes problemas nunca ha sido tan claro. Nuestro breve cuestionario ayudará a los investigadores a comprender los efectos a largo plazo sobre la salud., tratos, y cómo podemos prepararnos mejor para futuras pandemias.
Programa de Asistencia Financiera de NORD para miembros de la comunidad de enfermedades raras afectadas por COVID-19

Tips from Parents and Caregivers

Tips from Parents and Caregivers
Ask me 3 – recommendations for when you visit your doctor
Welcome to Holland by Emily Perl Kingsley
Mindfulness Meditation

Resource Guides (United States)

Incidencia en acción – Charla comunitaria sobre errores innatos del metabolismo: Experiencias del panel de promoción en acción sobre la detección de recién nacidos & Nutrición médica originalmente, presented on 22 May 2021: Video sobre incidencia

Educación y Apoyo al Paciente