Educație și Asistență pacient

Familii Povestiri

Broșuri

Acest caiet de îngrijire este conceput pentru a ajuta la organizarea informațiilor într-un singur loc pentru a ajuta familiile, îngrijitorii și furnizorii. Este disponibil în engleză și spaniolă.

Pregătirea pentru situații de urgență

Despre PA

Propionic Acidemia: Vorbește în spaniolă – de Carolina Galaretta,MD și Jennifer Myles, nutricionista cu NIH
- https://www.youtube.com/watch?v=ACXo6Aj0WT4
Acidemia propionica Prezentare de Claudia Soler-Alfonso în spaniolă pentru Fundația PA (pdf)
- Acidemie propionica – Cele elementare, tratamentul, si noi terapii de Claudia Soler- Alfonso, MD, FACMG, Medic pediatru – Geneticist clinic. Specialist în erori înnăscute de metabolism – Video

Despre instrumentele PA/MMA care permit învățarea metabolică a părinților (TEMPLU) Ghiduri de la Nutricia

Activitate Pagini pentru copii

Glosar

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 și PA

PAF COVID-19 info
Chestionar COVID-19 – Propionic Acidemia Fundația, lucrand cu tine, poate ajuta la combaterea acestui virus. Indiferent dacă ați avut COVID-19 sau nu, poți ajuta cercetătorii să înțeleagă întreaga experiență umană. Ești cea mai bună sursă de informații vitale. Puterea comunității de a se reuni pentru a rezolva problemele mari nu a fost niciodată mai clară. Scurtul nostru chestionar va ajuta cercetătorii să înțeleagă efectele pe termen lung asupra sănătății, tratamente, și cum ne putem pregăti cel mai bine pentru viitoarele pandemii.
Programul de asistență financiară NORD pentru membrii comunității bolilor rare afectate de COVID-19

Tips from Parents and Caregivers

Tips from Parents and Caregivers
Întreabă-mă 3 – recomandări pentru atunci când vizitați medicul dumneavoastră
Bine ați venit în Olanda de Emily Perl Kingsley
Mindfulness Meditation

Ghiduri de resurse (Statele Unite)

Pledoarie în acțiune – Chatul comunitar al erorilor înnăscute ale metabolismului: Advocacy in Action Panel Experiences on Newborn Screening & Nutriție medicală inițial, presented on 22 Mai 2021: Video despre advocacy

Educație și Asistență pacient