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Can you imagine living with the flu for years..


 

It pains me to have to write this and share with you our personal medical story, however, I have no other choice in order for me to be able to provide medical treatment for my wife.

Eighteen years ago, my wife, only twenty-two at the time, began experiencing flu-like symptoms daily. This was the start of a long, debilitating battle that my wife continues to fight against her own body every day. Gone are the dreams we had as a young couple as we were thrown into a dizzying world of doctors and medicine.

Her symptoms have gotten worse over time and include weakness, muscle tightness, achiness, dizziness, lack of energy, insomnia, and the constant feeling of flu-like symptoms. 

 

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During the past eighteen years, she has been evaluated by some of the world-leading medical doctors at some of the following medical Centers; New York Columbia Presbyterian, Mass General Hospital, Brigham Harvard Hospital, Mayo Clinic Rochester, and The Cleveland Clinic to name a few. She has undergone multiple surgeries and many other medical treatments and invasive procedures to try to diagnose or treat what the doctors thought was going on.

Last year, she was diagnosed with a rare disease known as mast cell activation syndrome. Even though she has been diagnosed, the treatment plan to manage this disease is a long and complicated one, fraught with many disappointments and setbacks. Mast cell activation syndrome affects every bodily system and heightens all sensitivity throughout the body. She is a true inspiration seeing how no matter what complications are thrown her way, she continues to push on, fight another day, and somehow does not give up.

Imagine waking up every day with the worst flu-like symptoms, no medicine to fight it, and still manage to not only get out of bed but take care of your family and all their needs. 

 

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To put it in perspective, when you want to bake a cake for your daughter’s birthday, you need to spread it over weeks in order to be able to do it. Think about how leaving the house becomes a luxury, and every time you can leave, you can’t leave on your own. Family simchas and gatherings are mostly missed due to not being able to even get out of bed. I have seen her care about others at her own peril, making sure that other people get the helping hand they need, no matter her pain level. This is a lady who has the biggest, most caring heart in the world, a smile that lights up any room she walks into, and a light that is slowly being crushed by the immense pain that she undergoes daily.

There are many necessary steps that need to be taken in order to treat this disease. One of the treatments that helps to alleviate her symptoms is travelling to a warm and humid environment for a few weeks at a shot. Mast cell activation syndrome is essentially that the body is undergoing a massive allergic reaction, for 24 hours a day, 7 days a week. That is where the need to travel to a different climate comes from. This is not covered by insurance and takes a deep financial toll out of us every time we must change the environment.

In addition to this, there are numerous medications, doctors that are not covered by insurance, as well as daily expenses. This is aside from the years of compiled medical debt that we are drowning from.

I have managed to deal with covering what I need to over the past few years with limited help from family members. However, with this diagnosis and the complications that come along with treating it, the financial burden is much too heavy to carry on the same way I have been.

I need your help to be able to provide my wife the treatment she needs as well as helping with the medical debt that we are drowning under. 

 

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Without your help, I will not be able to help my wife in fighting this awful disease and getting her life back after eighteen years of pain and suffering. I have watched over the years my wife how her physical health has diminished, how her hope is almost gone.

Imagine watching someone you love suffer in agony, knowing there is a treatment that will help but being unable to provide it for them on your own.

I implore you to please open your hearts to help her. I am heartbroken to see her suffering like this, and for our two wonderful girls to see their mother suffering in agony every day. Help me provide a better future for my family, one that is not filled with pain and uncertainty, but hope and happiness.

 




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