Page 16 - HFA Dateline 2013 Q4 Winter

it is iMpoRtAnt to take time and think of all of your blessings during this holiday season. …continued from page 15 tion process, he had a spinal cord bleed and had to be resuscitated My moderately buddy, my blood brother, and my severe Hemophilia B and infrequent bleeds paled in comparison to his severe Hemo- son He is also one of my greatest philia A and continuous bleeds It seemed that he was constantly having spontaneous blessings n n bleeds caused by circumcision, learning to walk, and bumping into things Unfortu- Phillip Hardt has moderate Hemophilia nately, the spinal cord bleed left him with some residual problems that still affect him B and is from Glendale, Arizona, where today, such as walking problems, incontinence, and mental challenges Sometimes his he’s involved with HFA’s local Blood mental challenges caused him to refuse infusions because he said the needles were Brotherhood group. He has a Master’s “poisoned ” To overcome this obstacle, we decided that Ammon should get a port-a- Degree in English and is retired from cath, which helped the infusion process considerably Honeywell, Aerospace. He is the proud Ammon is now in an assisted-living home, having developed psychiatric and behav- father of 8 children (3 biological and 5 ioral problems that require that he be heavily medicated to prevent him from running adopted, including Ammon, age 23, who away or hurting himself He has no safety awareness for himself or for others He con- has severe Hemophilia A.) Phil also has tinues to be a very important part of our family and one of the highlights of my week two grandsons who have Hemophilia B. is spending time with him and taking him to the movies Phil is a musician, loves to play the piano and sing, and is a great supporter of the of course, we never regretted Ammon’s adoption and we were blessed to adopt three more children, two of whom also have severe special needs Bringing Ammon into our bleeding disorders community. family taught me a lot – about myself, about hemophilia (who knew it could be so dif- ferent from one person to another?), and about the power of love Ammon is my movie Most Common types of Hemophilia: HEMopHiliA A HEMopHiliA B protein that is deficient or missing: factor VIII factor IX incidence: 1 in 5,000 male births 1 in 25,000 male births typical prophylaxis schedule: 3-4 times per week 2 times per week inhibitor development: approximately 30% of patients approximately 2-3% of patients Also known as: Classic Hemophilia Christmas disease number of factor concentrate brands: (5) recombinant products (2) recombinant products Currently being manufactured: (3) plasma-derived products (2) plasma-derived products 16 Dateline Federation | Winter 2013