Formazione e supporto del paziente

Storie di famiglia

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Brochure

Questo taccuino di cura è progettato per aiutare a organizzare le informazioni in un unico posto per aiutare le famiglie, caregiver e fornitori. È disponibile in inglese e spagnolo.

Preparazione alle emergenze

Informazioni su PA

Propionic Acidemia Presentazione di Claudia Soler-Alfonso in spagnolo per PA Foundation (PDF)
- video – “Acidemia propionica – Le basi, il trattamento, e nuove terapie” di Claudia Soler-Alfonso, MD, FACMG
  Pediatra – Genetista Clinica. Specialista in errori congeniti del metabolismo
Informazioni sugli strumenti PA/MMA che consentono l'apprendimento metabolico dei genitori (TEMPIO) Guide da Nutricia
- Inglese
- spagnolo
- francese
- Arabo

Pagine di attività per bambini

Glossario

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 e PA

PAF COVID-19 informazioni
Questionario COVID-19 – Acidemia Fondazione propionico, lavorare con te, può aiutare a combattere questo virus. Se hai avuto COVID-19 o no, puoi aiutare i ricercatori a comprendere l'intera esperienza umana. Sei la migliore fonte di informazioni vitali. Il potere della comunità di riunirsi per risolvere grossi problemi non è mai stato più chiaro. Il nostro breve questionario aiuterà i ricercatori a comprendere gli effetti sulla salute a lungo termine, trattamenti, e come possiamo prepararci al meglio per future pandemie.
Programma di assistenza finanziaria NORD per i membri della comunità delle malattie rare colpiti da COVID-19

Tips from Parents and Caregivers

Tips from Parents and Caregivers
Chiedimi 3 – raccomandazioni per quando si visita il medico
Benvenuti in Olanda da Emily Perl Kingsley
Mindfulness Meditation

Guide risorse (stati Uniti)

Advocacy in azione – Errori innati del metabolismo Community Chat: Advocacy in Action Panel Esperienze sullo screening neonatale & Nutrizione medica in origine, presented on 22 Può 2021: Video sull'advocacy

Formazione e supporto del paziente