Jan 13, 2017
Never in my wildest thoughts did I imagine my current role as care provider to my husband. For years leading up to 2010 our lives were pretty typical. Two daughters in school, a restaurant that we owned and managed and a family filled with love and joy. Leading up to that time, Fabio was extremely busy as a successful restaurateur having previously worked at the famous Bice Restaurant and opening his own Italian restaurant, Sesto Senso in Downtown Washington.
In the summer of 2010 he began experiencing changes in his body. Every time he ate, he began sweating profusely, having full body aches, feeling nauseated and massive stomach discomfort along with overall disorientation. Initial thoughts on food poisoning didn’t hold up as he continued to get ill with every meal.
While in Switzerland, we decided to see an allergist/immunologist who happened to run a Tryptase test that came back elevated and indicated the potential of a mast cell disorder. It took ten more months of testing in the United States to get a confirmation that it was a mast cell disorder.
Getting Diagnosis for mast cell disorders in the U.S. is a sometimes long and difficult thing. Many patients are told they are crazy or misdiagnosed through a variety of different doctors extending both the physical and emotional stress that the disease brings. The Fact is that mast cell disorders effect a great deal of people who are commonly misdiagnosed.
As my husband’s caretaker it has been my mission to learn as much about the illness as possible, act as an advocate on his behalf, look out for situations that could effect him adversely and above all, be prepared to handle his medical care in case of emergency. Situations can pop up quickly for reasons that are sometimes unexplainable.
While flying back from a trip to the Mayo Clinic, a change in the cabin pressure caused Fabio to go into shock and pass out. Unable to move he was carried from the plane by stretcher. It was heartbreaking for him, but a situation that I was prepared for. I was ready to brief the medical personnel, had copies of his medical records and stayed close throughout the process so as many unnecessary tests as possible were performed and he recovered quickly.
While unforeseen events can only be managed as they happen, we try to avoid those things that could cause him to react adversely. This means keeping foods that cause distress away from his meals, providing comfort as necessary and making sure his environment is pleasant temperature wise. His body is still suffering with reactions and each season seems to brings on a new set of symptoms but we know how to manage and treat them. Educating yourself and family members is critical and as overwhelming as it may seem you will soon become an expert on what helps and what to avoid.
Having access to “Masto” aware doctors goes a long way; try to assemble a reference team so you can all work together and decide on the best treatment options. As far as medical awareness is concerned, this disease is still in its infancy and can be incredibly frustrating. There is a lot of research happening but there is no magic pill. Dealing with Fabio’s mast cell disorders has been made easier with increased awareness among our immediate and extended friend networks. While we still have a long way to go, I encourage everyone to help raise awareness for mast cell disorders as we continue to look for treatments.