Our Stories
The Director of Client Services (Yleana) attended an educational outreach to a public school. She was asked to attend by a community member to provide an in-service on hemophilia to the teaching staff. This was an important request by the family because the school had many anxieties and misconceptions about his bleeding disorder. During the course of the presentation about symptoms and manifestations of bleeding disorders, a teacher spoke up and shared her personal story about how what was being described sounded very similar to what her son has been experiencing since birth. She went on to say that she has seen many physicians throughout the years and has been disregarded and has had no resolution. The medical staff has treated her as a "hysterical parent" and made to feel as if it was an imaginary situation. Yleana heard her concerns and referred her to a hematologist who specializes in bleeding disorders.
The AZ Hemophilia Association offers support groups. At the September 2007 group a couple attended for the first time. She is a hemophilia carrier and they are expecting a boy who has been diagnosed with hemophilia. The couple shared many concerns and attended the support group hoping for answers. The group was diverse in experienced parents. It ranged from parents with toddlers to a couple who has a 22 year old son with hemophilia. The couple came in feeling anxious and stated they have been nervous and unsure if they were prepared to raise a child with hemophilia. The couple asked questions about medical treatment, sports, and socialization. The parents were very honest and shared their experiences and gave the couple advice as parents who have been through many challenging situations. They all stated how each emergency has made them stronger and empowered and have gained confidence. The new couple told the support group coordinator that they were extremely happy they attended and are confident that they are mentally and emotionally prepared to raise a child with hemophilia. They also stated that they are happy to know that they can call the association or any of the parents if they have any questions or concerns.
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Arizona Hemophilia Association Story
Arizona Hemophilia Association Story