We are the “Haber” twins. Tammy and Terry. Today we go by our married names Tamara Kahn and Terry Hord. We are both MS survivors for over 20+ years. We have created a social media platform called “TwinsCoast2Coast” to inspire, empower, support and educate others about the disease of MS. Our intent is to simply tell our story, imperfections and all, and hope that it connects and resonates with those going through the challenges of multiple sclerosis.
We were born identical twin sisters in Florida “the sunshine state” in 1968. We were happy, healthy and active children. We loved to swim, ride bikes, ice skate and play tennis. As we look back on our early years at around the age of 10, there were symptoms and signs of MS. It was 1978 and MS was not a disease doctors knew much about. At that time in our lives we were both very active in sports and extracurricular activities. In the evenings after we had finished those practices and activities, we would both have terrible tingling and pain in our legs. Our pediatrician and parents would tell us we were just experiencing “growing pains”. Our doctor told our parents to rub Vicks Vapor rub on our legs to help our “growing and aching” muscles. Oh, how we loved the cooling sensation of the Vicks being massaged into the muscles on our legs at night.
Fast forward 5 years and Terry and I are 15 years old. Our mother was 35 and diagnosed with terminal cancer. Our family unraveled at this time. Our mother’s parents, whom we were all very close with, had a terrible time grasping the idea they had a child with a terminal illness. Our father who was 39 at the time did not have the coping mechanisms necessary to deal with our mother’s disease. That left us all feeling very stressed. Our world that was once carefree and happy became a world of family stress and personal turmoil. In the winter of that same year we both became very sick with Infectious Mononucleosis* of which the Epstein Barr virus is thought to be a potential trigger, with the development of multiple sclerosis. We were both hospitalized for mononucleosis and treated. Little did we know the potential ramifications this illness had caused.
We continued to be highly positive and motivated teenagers even with the unfortunate stressors in our lives. We were both involved in many clubs and sports in high school. On several occasions during the hot humid Florida afternoons during tennis team practices we found it difficult to complete the two warm up running laps around the football field. Our legs would feel heavy and we both again experienced the flushing burning feeling down our legs. Our tennis coach had the misperception that we were not putting out an effort. This response is not uncommon as others are often not aware of the disease. We were the only two team players that unfortunately could not complete the warm ups. Looking back, these most likely represented the symptoms of early MS.
We went off to college in the fall of 1986. We were 18 years old. It was a very happy time for us. We learned to adapt to our limitations even if we did not fully understand the reasons why we felt these symptoms. We conveniently scheduled early morning classes to counterbalance the fatigue in the afternoon. We were experiencing MS fatigue and had no idea we were in the early stages of MS. Throughout it all our college years were productive and enriching for us both as we coped with our physical limitations.
The earth shook for us August 1992 when our mother passed away. She was only 44 years old and we were both 24. The emotional stress was powerful and debilitating. We found our bodies in constant pain.. We both experienced instant visual changes, body tingling, and fatigue.
The following years were filled with significant moments for the two of us. Marriage, the birth of our children and the forever life changing diagnosis of multiple sclerosis.
We look forward to continuing to share our MS journey in our blog post. We are MS advocates. We intend our social media page to be informative, inspirational, interactive and fun. Please follow along with us on our Instagram@twinscoast2coast, blog, Facebook- Twins to Coast, and YouTube.
*Per the CDC, “Infectious mononucleosis, also called “mono,” is a contagious disease. Epstein-Barr virus (EBV) is the most common cause of infectious mononucleosis, but other viruses can also cause this disease.”