My Husband’s Seizure Disorder Requires Extra Care Due to Hemophilia

My Husband’s Seizure Disorder Requires Extra Care Due to Hemophilia
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My husband, Jared, has a complex medical situation: He has severe hemophilia B and a seizure disorder, which both greatly affect his daily life.

He recently started online consultations with a psychologist, a psychiatrist, and a neurologist to help him work through his seizure disorder, which was caused by a cranial bleed.

Jared’s neurologist believes that his brain wound could have already healed completely. It has been nearly two decades since he had the injury. Yet his neurological condition ultimately puzzles doctors, because his seizures appear to be very different from the typical epileptic seizure. He had right temporal lobe damage from the bleed, yet the actions he does during his seizures do not appear to be fully consistent with damage in that part of the brain.

Jared has noticed a pattern of seizures appearing after he experiences extreme emotions, both positive and negative. For this reason, the doctors he has seen are inclined to believe that his seizures are psychogenic, or triggered by psychological factors. His previous psychiatrist referred to the term “conversion disorder” to describe his condition.

According to Medline Plus, conversion disorder is a “mental condition in which a person has blindness, paralysis, or other nervous system (neurologic) symptoms that cannot be explained by medical evaluation.” In fact, Jared’s entire healthcare team has great difficulty attempting to understand his seizures. His recent attacks seem to have morphed into a different form compared with how they first appeared after Jared’s cranial bleed. They’ve gone from strictly convulsing and stiffening to odd behaviors and utterances.

The psychogenic nature of Jared’s seizures adds another layer of complication to the picture. Most people would seek mental health help from a psychiatrist, who would then give them medication or therapy. However, Jared cannot simply take medications for his brain condition because many antidepressants can cause bleeding. This leaves psychotherapy as his only viable option.

Seeing a psychologist has given Jared some peace of mind and, more importantly, a sense of hope that his seizures may be treated. More than hemophilia, he sees the seizures as the one thing that stands between him and achieving his goals.

If not for the seizures, Jared’s life would be more normal. He would be able to drive places by himself. Since he would become much more independent, he could help me a lot more with our business.

The road to healing remains long and stretches far ahead. The psyche of the chronically ill patient can be a complex thing to untangle due to their long history of trauma. Jared often tells me this is something “normal” people would not understand.

I admit that I often pray for my husband’s seizures to be completely healed. That would ease much of my own stress and worry, especially during these emotionally and financially trying times.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself. She lives in the Philippines with her husband, Jared, and their daughter, Cittie.
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Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself. She lives in the Philippines with her husband, Jared, and their daughter, Cittie.
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