患者教育和支持

家庭故事

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如果您想将您的故事添加到家庭故事页面或将其提交给时事通讯, please email it to [email protected] 完成照片和故事发布表,en (英语) or 照片和故事发布表,en – 西班牙语

小册子

本护理笔记本旨在帮助在一个地方组织信息以帮助家庭, 照顾者和提供者. 它有英语和西班牙语版本.

应急准备

关于PA

丙酸血症 Claudia Soler-Alfonso 为 PA 基金会所做的西班牙文演讲 (PDF格式)
- 视频 – “丙酸血症 – 基础, 治疗, 和新疗法” 克劳迪娅·索勒-阿方索 (Claudia Soler-Alfonso), MD, FACMG
  儿科医生 – 临床遗传学家. 先天性代谢缺陷专家
关于 PA/MMA 工具促进代谢父母学习 (寺庙) Nutricia 的指南
- 英语
- 西班牙语
- 法语
- 阿拉伯

儿童活动页面

词汇表

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和PA

PAF COVID-19信息
COVID-19问卷 – 丙酸血症基金会, 和你一起工作, 可以帮助抵抗这种病毒. 是否拥有COVID-19, 您可以帮助研究人员了解完整的人类经验. 您是重要信息的最佳来源. 社区团结起来解决重大问题的能力从未如此清晰. 我们的简短问卷将帮助研究人员了解长期健康影响, 治疗方法, 以及我们如何为未来的大流行做好最好的准备.
NORD经济援助计划针对受COVID-19影响的罕见疾病社区成员

患者教育和支持