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The Importance of Community for Chronic Illnesses

The Importance of Community for Chronic Illnesses

by roseandgold | Jul 10, 2024 | Chronic Conditions, Chronic Illness, Community, Hemophilia, Local Support Groups, Support

If you have a chronic illness, you might find that it can be a lonely and isolating journey. You have the constant management of symptoms, frequent doctor visits, and the everyday challenges of navigating a world that often doesn’t understand can take a toll on...
Recognizing Hemophilia Caregivers

Recognizing Hemophilia Caregivers

by roseandgold | Mar 25, 2024 | Advocacy, Bleeding Disorders, Chronic Conditions, Community, Encouragement, Hemophilia, Hemophilia Awareness, Hemophilia Caregivers, Mylyfe, Support

Living with a genetic bleeding disorder has many challenges, not just for the individuals diagnosed with the condition but also for their caregivers. Hemophilia caregivers are vital in managing the daily needs, emotional support, and medical care of those living with...
How To Be a Hemophilia Ally

How To Be a Hemophilia Ally

by roseandgold | Dec 21, 2023 | Bleeding Disorders, Chronic Conditions, Community, Hemophilia, Mylyfe

Hemophilia is a rare bleeding condition impacting individuals globally, and if you have a loved one with hemophilia, there are many steps you can take to be a supportive ally. In this blog post, we will explore the significance of being a hemophilia ally and explore...
How Communities Benefit People with Chronic Illnesses

How Communities Benefit People with Chronic Illnesses

by roseandgold | Sep 29, 2023 | Bleeding Disorders, Chronic Conditions, Community, Mylyfe

Living with a chronic illness can be an incredibly challenging experience. The physical and emotional toll it takes can often leave individuals feeling isolated, misunderstood, and overwhelmed. However, there is a powerful tool that can provide solace, support, and...
The Journey to Summer Camp for Children with Bleeding Disorders

The Journey to Summer Camp for Children with Bleeding Disorders

by Mylyfe | Jul 19, 2023 | Bleeding Disorders, Community, Encouragement, Hemophilia, Tips

Summer camp can be an exciting and fun-filled experience every child looks forward to and a great opportunity to have fun, make new friends, and learn new skills.  For parents of children with bleeding disorders and hemophilia, it can also be a catalyst for...
Parenting a Child With a Chronic Condition: Trusting Your Instincts and Riding the Curve

Parenting a Child With a Chronic Condition: Trusting Your Instincts and Riding the Curve

by Laura Sousa Wagner | May 3, 2022 | Community, Mylyfe, Stories

Parenting a Child with a Chronic Condition: Trusting Your Instincts and Riding the CurveBy Laura Sousa Wagner (a guest blogger) Laura shares her story about finding out her newborn not only has a rare disorder, but also an inhibitor.  How does a new parent decide on...
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