Patient Education and Support
Check out the Family Stories page.
If you would like to add your story to the Family Stories Page or submit it for the Newsletter, please email it to [email protected] with a completed Photograph and Story Release Form (English) or Photograph and Story Release Form – Spanish
- Propionic Acidemia Foundation Brochure – English PDF
- Propionic Acidemia Foundation Brochure – Spanish PDF
This Care Notebook is designed to help organize information in one place to help families, caregivers and providers. It is available in English and Spanish.
- PAF Care Notebook Planner – English PDF
- Propionic Acidemia Care Notebook – Spanish PDF
- Medical Home Portal – Care Notebook
- Build Your Own Care Notebook – American Academy of Pediatrics
- Article in Rare Advocacy Movement – The Care Notebook: An important tool for individuals their families, caregivers and medical team.
- Emergency Preparedness Handbook for those with Propionic Acidemia or Methylmalonic Acidemia
- Emergency Preparedness Handbook for those with Propionic Acidemia or Methylmalonic Acidemia (in Spanish – coming soon)
Children’s Activity Pages
- Glossary of Commonly Used Terms
- National Human Genome Research Institute – Talking Glossary of Genetic Terms
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 and PA
- PAF COVID-19 info
- COVID-19 Questionnaire – Propionic Acidemia Foundation, working with you, can help fight this virus. Whether you’ve had COVID-19 or not, you can help researchers understand the full human experience. You Are the Best Source of Vital Information. The community’s power to come together to solve big problems has never been clearer. Our short questionnaire will help researchers understand long-term health effects, treatments, and how we can best prepare for future pandemics.
- NORD Financial Assistance Program for rare disease community members impacted by 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)
- Centers for Medicare & Medicaid Services (Medicaid Waiver and Demostrations List)
- National Center for Medical Home Implementation
- NICHCY – State Organization Search
- Family Medical Leave Act
- Nutrition Managment Summaries and FAQ in English and Spanish from SERN and GMDI
- Nutricia TEMPLE Educational Materials for Caregivers
- Transportation and Lodging
- Other Support Groups
Advocacy in Action – Inborn Errors of Metabolism Community Chat: Advocacy in Action Panel Experiences on Newborn Screening & Medical Nutrition Originally, presented on 22 May 2021: Video on advocacy
Rare Disease Video with Moderna and PAF! March 2020
Rare Disease Educational Support Program