About Hemophilia...

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 are known to have hemophilia. Hemophilia usually only occurs in males, except for rare exceptions. A person with severe hemophilia means that they have less than one percent clotting factor in their system.

Friday, June 11, 2010

A Wife's Perspective of Living With Hemophilia

When Amanda Rose married our son, Dwight, she entered the world of living with a person, who has a chronic bleeding disorder. Her life will never be the same again. Already working in the medical field, Amanda was curious about hemophilia when she first met Dwight. She asked numerous questions and researched hemophilia to find out how it affects a person. Before they were even engaged, Amanda and Dwight talked daily working through issues that might affect them after being married and went to marriage counseling. Today Amanda works fulltime as a pharmaceutical technician at Walgreens and goes to nursing school. Now that she is married her biggest challenge is managing time for her son and husband between work and school.

Since Dwight is unable to work fulltime, Amanda has the responsibility of providing the main income. She quickly learned firsthand the frustration of state insurance with all its paperwork and limitations of income that doesn’t allow a person to better themselves financially. Thankfully, Amanda has great insurance at Walgreen’s that also covers Dwight. While they don’t have to worry about insurance coverage at this point, Amanda is keeping herself informed concerning the future as adequate insurance coverage will always be of major importance.

Amanda is quickly learning to identify the signs of bleeding episodes- like limping for Dwight’s chronic ankle bleeds or crankiness as a sign of pain- and has to take the initiative asking Dwight if he is having a bleed as Dwight tends to hide bleeding episodes or downplay them. A big frustration is worrying about Dwight factoring himself regularly like he should in order to avoid bleeds. When Dwight woke up with a hip bleed one morning, Amanda was suddenly faced with the added stress of trying to call in and see if she could get the day off and/or work out a babysitter for Case. Thankfully after a couple of days, Dwight was back on his feet again. Dwight’s arthritis is another main issue that Amanda is concerned about. Keeping informed and Dwight mobile is a big priority.

Her advice to other girls considering marrying or someone living with hemophilia is to give unconditional acceptance. Keep communication open by making sure that the other person doesn’t hide his feelings from you and work through any disagreements. Living with a person who has hemophilia is quite challenging compared to someone without any medical history. If anyone can meet the challenge it is Amanda Rose. With her caring personality that will make her a fantastic hospice nurse she also is the perfect marriage partner for Dwight. We are so proud of you, Amanda. You are the best thing that ever happened to our son!