Hemophilia is a rare genetic bleeding disorder in which the blood does not clot normally. Persons with hemophilia are missing or have a low level of a protein needed for normal blood clotting. About 18,000 people in the United States have hemophilia. Hemophilia usually occurs only in males (with rare exceptions). A person with severe hemophilia means that they have less than one percent clotting factor in their system.
For information about life with hemophilia and recent updates in our family check out my blog at:
DORCAS ANNETTE WALKER is a second-generation woman with the genetic gene of hemophilia. Her father had severe hemophilia and died of AIDS due to contaminated clotting factor. Dorcas is the only daughter (of two) to be a hemophilia carrier.
Dorcas delt with bleeding issues all through her life beginning in childhood with bad nose bleeds, easy to bruise, and sometimes blood oozing when brushing her teeth. By the time she was twelve, Dorcas was anemic and had to go on iron supplements. Menstruation caused more bleeding issues, but since she was a girl, the medical field dismissed it as girls weren't believed to be bleeders. After giving birth to a girl, Dorcas hemorrhaged and had to have blood transfusions.
It wasn't until Dorcas gave birth to a son four years later that she was tested and told she was a hemophilia carrier- something Dorcas had already figured out on her own. She also had prolonged bleeding after this delivery as well. Then her daughter began having severe nosebleeds, was tested and found not only to be a carrier, but to have mild hemophilia too. Nobody believed Dorcas when she tried to tell the medical staff that the clotting level had to fluctuate as she had noticed over the years when at times, she tended to bleed easier- with small cuts sometimes oozing, having to use pressure, and not wanting to clot right away. It wasn't until Dawn's clotting level tests came back different that Dorcas was taken seriously.
Upon reaching her sixties, Dorcas began for the first time having internal bleeds after falling or injuring herself- like her daughter had in the past. She began trying to get on the state hemophilia program to get help. Today, Dorcas is still reaching out to get help from the hemophilia community.
Her daughter, Dawn, has mild hemophilia as well as being a hemophilia carrier after having severe nose bleeds and tested at five years of age. This is very rare as hemophilia usually passes from the male with hemophilia, down through his daughter as a hemophilia carrier, and then to her son. They said that Dawn wouldn't have any internal bleeds, but she had a couple due to injury and had to be given factor eight to get the bleeds under control.
In her teens, Dawn went on a trial study using Stimex for clotting with her menstruation bleeding. After Dawn got married and was pregnant, she was monitored closely during her pregnancy (was considered a risk pregnancy) and the c-section delivery, which went fine. Dawn went on to have three more pregnancies and c-sections with no bleeding problems.
Dorcas' son, Dwight, has severe hemophilia inherited from his grandfather with less than once percent clotting factor in his system. He was diagnosed at one week and thus began a journey with hemophilia that would continue throughout his lifetime. Every baby shot triggered muscle bleeds. At nine months, Dwight nearly hemorrhaged to death from a mouth bleed. When Dwight was four years old, his body built up antibodies to the factor causing excruciating pain and prolonged bleeding.
During his grade school and teen years, Dwight averaged one to two internal bleeds a week. Despite this, he was very active playing on the basketball team and later working at a body shop. Due to target joint and severe bleeds over the years, Dwight's left arm has limited motion and he has arthritis in both ankles.
As a young adult, medical science advanced to where Dwight only has to infuse himself once every two weeks that keeps his clotting level at a low level thus only having to use factor eight for any breakout internal bleeds. This helps avoid the constant sticking to infuse factor as well as having severe bleeds causing target and joint damage.