The MilFam Diaries: Chronicles of a New Milspouse Pt. 9

Continued from last week…

Moving (known in the military as PCSing, for “permanent change of station”) is stressful. PCSing overseas can be even more stressful. For “acquired dependents” (new spouses) to join a husband or wife who is already overseas, they need to be sponsored by their spouse’s command. It may sound simple — get permission, then get on the plane — but I ran into an unexpected hurdle.

During my overseas suitability screening at Walter Reed National Military Medical Center, the doctor noticed that I have a bleeding disorder. I have had this ailment — von Willebrand disease — since I was born. While not as well known as hemophilia, von Willebrand is actually the most common hereditary bleeding disorder, occurring “in about 1 of every 100 to 1,000 people,” according to the National Heart, Lung, and Blood Institute.

People with von Willebrand disease have low levels of a protein (von Willebrand factor) that helps the blood clot. In my case, I had heavy nosebleeds as a child, and I received clotting medication before tooth extractions. If I needed surgery, I would be given IV medication in advance; if I were severely injured and the injury involved bleeding (internally or externally), I would be treated with the same drug. Von Willebrand had never interfered with my life in any significant way — until I was preparing to join my husband at a U.S. Navy base in Spain.

I never thought that a military hospital would be unable to treat me and unwilling to carry a drug that could literally save my life. Many people who have von Willebrand live their entire lives without knowing they have it — was the U.S. military unprepared to care for someone who was bleeding and experiencing difficulty with clotting?

My overseas suitability request was denied. I was shocked, angry, confused — furious.

If being in Spain had actually posed a greater risk to my safety and well-being, we would not have pushed the issue, and I would have remained in the United States. We fought the decision because doctors who knew my case assured me (and a few doctors in Rota) that life in Rota, Spain, would pose no greater risk to my health than life in Washington, D.C.

We found a U.S. Navy doctor and nurse in Rota who were willing to work with me. They recommended that I be tested to determine how severe my clotting issues were and whether my body would respond to a prescription nasal spray that I could carry with me (just as someone with asthma carries an inhaler). I needed to demonstrate that this nasal spray would temporarily release additional amounts of clotting factor into my bloodstream and give me time to get to a hospital with a hematology clinic.

I went through the lengthy test, and was overjoyed when it found that the spray worked in my system for 32 minutes. I had done what was asked, and I was able to demonstrate that I was fit to move to Rota.

While I was going through the medical testing, someone in Rota (without my knowledge or permission) enrolled me in the Exceptional Family Member Program (EFMP). This program works with military families who have special needs to make sure that they get the treatment and support they need. EFMP is an incredibly important and necessary program — but as I learned, it also can prevent dependents from moving overseas or to remote parts of the United States.

Once my name showed up on the EFMP rolls, my request for command sponsorship became even more complicated (if that is even possible). I thought that was it — I wasn’t going to be able to move.

Aleksei kept the faith.

We continued to challenge and we continued to fight. My husband was persistent and leveraged every reference he could find that reinforced our “case.” I had demonstrated that I was fit for life overseas, and we decided not to take “no” for an answer. In the end, the clinic on base was helpful and supportive, but it took some work on our end to get to “yes.”

My reason for sharing this story is not to complain about my difficulty moving to Spain; it is to emphasize that “the squeaky wheel gets the oil.” When advocating for yourself or your family, most of the time you know what is best. Just because you don’t get the answer you want doesn’t mean you should stop asking the question.

If you need information on how to best advocate for your family, contact MFAN.

For more information on EFMP please visit http://www.militaryonesource.mil/efmp