Signs of a rare disease Marchiafava Bignami Disease
This is my first time writing my own story. Tiffany was 34 years, weighing about 100lbs before her sickness, a vegetarian and had acid reflux. She wasn’t the healthiest nor did she take care of herself right away when she started to feel sick.
Tiffany lived with my cousin and his wife in Las Vegas, NV. In December 2015, my mom received a phone call from my cousin and he had told her that my sister was sick in bed. My mom would call to check on her and she just kept ignoring her calls. She was getting really worried so she decided to go check on her. When my mother arrived at the home, she had entered the room. My mom knew something was wrong so my sister was admitted to the hospital. This was about a couple weeks before Christmas and the doctors said she would be out in no time.
Weeks went by and still no signs of getting better. Tiffany spent Christmas in the hospital so we brought her gifts to open. We noticed her eyes weren’t looking right so we were all worried. The doctors had no answers what the cause of this could be. Months went by, birthdays and holidays, still no answer. My sister now had to be transferred to a facility where they would have her stay long term. We would visit pretty often almost every day and my mom was by her side the whole time.
In the beginning of 2016, the doctors told my mom that they needed to discuss something with her. About 6 doctors surrounded the room and gave my mom a hug with heart wrenching news. They had told her that Tiffany would not be able to walk ever again if she heels from this sickness. Her limbs were stuck, she lost all muscle, and she had no motor skills in her hands and legs. We were so confused on how physical therapy wasn’t working for her. The doctors still had no answer what was actually causing her body to shut down.
Again, months went by, celebrating my sisters 34th birthday in her hospital bed. Everything just got worse. She wasn’t eating, couldn’t talk, couldn’t use her hands, her legs were stuck, she was malnourished, had a vitamin deficiency, blood clots and her body was completely shutting down on her. Shortly after her birthday, Tiffany started to show no signs of getting better and the doctors finally found out what the cause was. She was diagnosed with a rare disease called Marchiafava Bignami Disease and it had already hit her bloodstream. So having a cure at this point was impossible since they caught it too late.
Definition: Marchiafava-Bignami disease is a rare affliction characterized by primary degeneration of the corpus callosum associated with chronic consumption of ethanol. (MBD) is a very rare disorder of demyelination/necrosis of the corpus callosum and the near subcortical white matter that is especially predominant in ill-fed alcoholics. The disease may occasionally occur in patients who are not alcoholics but are chronically malnourished.
On August 30th, 2016 Tiffany had passed away. My mom received a phone call late at night from one of the nurses and she has told her she was gone. My mom was in disbelief. She even told the nurse that she was just sleeping and she needed to wake her up but the nurse had to really explain to her that she was in a peaceful sleep and she will not wake up. When I received the call, I just fell crying. We arrived shortly after and said our goodbyes. My dad, her stepdad, passed away shortly after from a heart attack. It was very rough on us.
I wanted to write this story because Tiffany had no idea that this would cost her life. I did some research online and found a man who miraculously recovered from Marchiafava Bignami disease. He said his entire year having this disease, he could hear everything so it gave me comfort knowing she heard us this whole time. He also explained that when he talked, it was like being stuck inside a bottle hearing his own voice but everyone around him couldn’t make out his words. It gave me some comfort knowing that everything we said to her, she could hear us.
Forever in our hearts my beloved sister & father. Rest In Peace.
