The story of Tiffanie
In 2010, months before closing on our first home and our upcoming wedding, I was rushed to the hospital. That day was life changing. I knew I hadn’t been feeling myself but thought it was just stress related. I did have 3 jobs at the time, was planning a wedding and closing on a home after all. My blood pressure was around 220/160, my heart was racing, I woke up with blurry vision and was feeling very weak. At 27 years old, they told me I was heading for a stroke. After a 2 week stay in 2 different hospitals, countless medical teams asking questions and examining me, test after test and they still were not sure what I had. They thought it was everything under the sun including a thyroid storm and even fibromyalgia. After a Pet Scan, all signs pointed to an extremely rare disease called Takayasu’s Arteritis. Taka- What?!?! Apparently I had blockages or “stenosis” of the arteries that lead to my kidneys and my bowel. One kidney had completely stopped functioning and the other was working at 50%. When my disease is active, urine backs up into my kidneys and I have excruciating stomach pain for about 6-8 hrs after I ingest anything. We were devastated. My wedding was in a month and a half and we were getting ready to move into our first home. Now a rare disease that no one has ever heard of and cannot even pronounce is what we had to contend with! After seeing a myriad of specialists and finally deciding on a Rheumatologist that I trusted and who was brave enough to take on my disease, treatment had begun. A few rounds of 1000mg of Steriods via IV was the first step and about 16 other pills daily. Eventually after months of fighting with insurance to cover a biologic chemotherapy-like drug that would wind up being my savior, Remicade treatments were finally approved. Here I am, almost 5 1/2 years later, finally off steroids (for the 2nd time) and still going for Remicade treatments. Now my daily pill intake is down to 6 and I have a medical team in NJ & PA that I trust with my life. Each day is a gift but not promised. I’m tired, achy and feel weird things almost every day. I try to make the most out of life. I’m just thankful to be here to talk about it. My family, friends and students have been my back bone. The rare disease community has been an integral part of my success on these medications as well. The support and relief I get from speaking to others in my shoes has been invaluable. I will continue to support and advocate for rare diseases and hope you will too. This is my rare disease story.