A Rahway mother whose child has hemophilia B spent a long time trying to figure out why exactly her son was constantly covered in bruises and now she is trying to raise awareness of the rare disease with World Hemophilia Day.
Milinda, mother of Andrew, was questioned suspiciously by doctors when she would take her son, who is frequently covered in bruises, to find a diagnosis for his disease.
She was eventually told her nine-month-old son has hemophilia B – a chronic, disabling, painful bleeding disorder characterized by recurrent bleeding episodes, often into the joints and muscles.
The diagnosis was extremely scary, and at first, Milinda was in denial at first but she knew she had to pick herself up and start advocating for her son’s care.
Now, Milinda acknowledges that having a child with a rare disease can be extremely difficult – it is incredibly hard to see her son struggle with the pain – but life with hemophilia is not impossible.
Andrew loves sports like basketball, so she comes up with ways to manage his medication schedule to ensure he will have optimal levels of clotting factor in his system for better protection; and educates everyone in her son’s life – family members, teachers and coaches – so they know what to do should he suffer a bleed.
April 17 is World Hemophilia Day, a day where organizations from around the world come together to raise awareness and increase support for the approximately 200,000 people living with the condition globally. Despite treatment advances over the past two decades, people with hemophilia continue to experience bleeding episodes, and as much as 75 percent of the world hemophilia population remains inadequately treated.
Milinda and Andrew are hopeful for new treatments on the horizon that may ease the burden of living with hemophilia. She is happy to have a family and community supporting her and Andrew, and believes that knowledge and education are key to coping with a rare disease.
Supported by the World Federation of Hemophilia (WFH), hemophilia awareness day was first established in 1989 to honor Frank Schnabel, the organization’s founder, whose birthday falls on April 17.
Hemophilia is a condition in which bleeding is prolonged. Hemophilia is a condition present from birth and is normally inherited; you can’t ‘catch’ hemophilia or pass it onto others. In some rare instances, hemophilia may develop later in life (typically affecting people in the 50+ age group).
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