Top Tweets for #KnowPKDeficiency
Maaike notes that people often manage the impact of #PKdeficiency at home on their own most of the time, and she highlights some of the challenges they may face. #KnowPKdeficiency
Pyruvate kinase (PK) deficiency can be life-threatening for newborns, so careful management is critical. Perinatal complications may include severe hemolysis, preterm birth, hydrops, and jaundice. #PKdeficiency #KnowPKdeficiency
Tamara describes the debilitating impact pyruvate kinase (PK) deficiency can have when she hasn’t had enough sleep. #KnowPKDeficiency #hemolyticanemia
DYK? Some patients with #PKdeficiency may find that their #transfusion needs change over time. For example, hemoglobin levels that were well tolerated at a younger age may no longer be sufficient as patients get older. #KnowPKdeficiency
As a father, Tim is concerned about the well-being of his young son, who has PK deficiency and needs frequent transfusions. From Adam, who also has PK deficiency, Tim learned ways to make the transfusion process more
comfortable for his son. #KnowPKdeficiency #HappyFathersDay
Transfusions can be a difficult part of living with PK deficiency—particularly with young children who can’t yet explain how they feel. For Tim, talking to Adam, who has PK deficiency, helped him better understand what his own young son might be experiencing.
#KnowPKdeficiency
Molly and Stephany connected over their shared experiences of managing motherhood while living with the effects of PK deficiency. They also discussed the variability in the symptoms experienced. Watch the video on our YouTube channel: https://t.co/jm7l3qzglh #KnowPKdeficiency
Parenthood has many challenges, but for people living with PK deficiency, there are often extra obstacles. Stephany and Molly talk about the impact of fatigue, illness, and hospitalizations on parenting—and the accompanying guilt they feel. #KnowPKdeficiency #WomensHealthMonth
ICYMI: Did you hear the newest episode of “Just Listen: Voices of PK Deficiency”? Don’t miss Dr Rachael Grace and Dr Matthew Heeney discussing clinical trials and why it’s important for patients to participate and understand what’s involved in taking part. #KnowPKdeficiency
#HappyMothersDay to mothers everywhere! For Stephany and Molly, living with PK deficiency meant that there were extra factors to consider before having children, with guidance from their health care providers. Here, they discuss the decisions they made. #KnowPKdeficiency
This month’s episode of “Just Listen: Voices of PK Deficiency” is out! It features Dr Rachael Grace and Dr Matthew Heeney discussing the different types and phases of clinical trials and the importance of patient participation. #KnowPKdeficiency #PKdeficiency
For patients with PK deficiency, transfusion requirements may change at different times. Dr Sujit Sheth discusses individualizing management of this rare disease, and why his approach might differ for children as compared to adults. #KnowPKdeficiency
ICYMI: Have you heard this episode of “Just Listen: Voices of PK Deficiency”?
Dr Rachael Grace talks to Jonathan and his mother, Alejandra, about how they managed what can be a tricky time for young patients with PK deficiency—the transition to adult care. #KnowPKdeficiency
Finding other people living with the same #raredisease isn’t common, so meeting each other was a welcome opportunity to connect for John and Adam. Online groups can help people find the support and solidarity that are vital to emotional well-being. #KnowPKdeficiency
Another episode of “Just Listen: Voices of PK Deficiency” is out! Dr Rachael Grace chats with Alejandra Watson and her son Jonathan, who is living with PK deficiency, about the transition to adulthood and taking responsibility for his own health care. #KnowPKdeficiency
Transfusion needs can vary widely for patients living with #PKdeficiency, depending on the individual person as well as circumstances such as age, illness, stress, or pregnancy. In this video, John and Adam discuss their different experiences. #KnowPKdeficiency
Although patients’ experiences with PK deficiency can differ widely, Molly and Karla found many similarities, including the challenges of managing symptoms and finding the health care they needed. Watch on our YouTube channel: https://t.co/vWjvPD4LUs #KnowPKdeficiency
On #NationalDoctorsDay, our sincere thanks to health care professionals for your commitment to understanding PK deficiency and its impact on patients. Here, Dr Kleber Fertrin shares his thoughts on talking more about this #raredisease. #KnowPKdeficiency
After years of trying to find the right support and health care for their PK deficiency, Karla and Molly fully appreciate the emotional and physical support they receive from their families and health care teams, as they explain in this video. #KnowPKdeficiency
Growing up with PK deficiency, Molly and Karla struggled with #fatigue and a lack of energy—common symptoms of this rare hemolytic anemia. It wasn’t until they looked back as adults that they realized the impact the disease had on them. #KnowPKdeficiency
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