We’re the Haber twins – Tammy and Terry – identical twins born in Florida in 1968. Today we go by our married names – Tamara Kahn and Terry Hord – and live in California and Georgia – making us TwinsCoast2Coast. We were both diagnosed with Multiple Sclerosis (MS) in our 20’s and are battling this disease together, bonded by our love for each other, our advocacy to find a cure and our passion for helping others on similar journeys.
We’re often asked if there is a family history or some other suspicion of our diagnosis. We were happy, healthy and active children. Some of our favorite sports were swimming, riding bikes, ice skating and playing tennis. As we look back, we realize there key events that were early signs of MS symptoms even before our teen years.
In the 70’s, MS was not a well-known disease, especially in children. We were both active in sports and extracurricular activities and would experience terrible tingling and pain in our legs in the evenings. Our pediatrician advised our parents to rub Vicks VapoRub on our legs to help our “growing and aching” muscles – and we loved the cooling sensation of the Vicks being massaged into our legs at night. No one suspected there were other medical issues.
In high school we continued to be involved in clubs and sports. We sometimes found it difficult to run in the hot Florida sun as we would experience flushing and burning in our legs. Coaches mistakenly assumed we didn’t want to complete the exercises, reprimanding us for not making more of an effort. This response is not uncommon as others are often not aware of the disease.
As teenagers, we both became sick with Infectious Mononucleosis.* The Epstein-Barr virus has been known as a common source of mononucleosis but in more recent research, it has been found to dramatically increase the odds of developing MS. We both recovered, but because this connection was not yet known we were unaware of the long-term ramifications of this virus.
Other stressors in our life affected our health. Our adored mother was diagnosed with terminal cancer at the age of 35 . It was challenging for the family to accept this diagnosis, but we all joined together to care for and support each other through this journey.
We attended Florida State, sharing a room, clothes and classes. While we were generally healthy, we learned to adapt to our limitations even though we did not yet understand the reason for our symptoms. For example, we scheduled early morning classes to counterbalance the fatigue we often felt in the afternoon, but had no idea we were in the early stages of MS.
Our mother’s death in 1992 was another shock to our emotional and physical health. The stress was powerful and debilitating and we found our bodies in constant pain. We both experienced instant visual changes, body tingling, and fatigue – but again never assumed we had a chronic illness. It wasn’t until 3 years later that Terry – while searching for relief from ongoing optic neuritis – was given an MRI and spinal tap that confirmed her diagnosis of MS. Tamara would be diagnosed 3 years later.
Although MS has been our constant companion, we focus on enjoying and living each day to the fullest. We’re both married, each of us have 2 daughters and are surrounded by a loving community of extended family and friends. We are MS advocates and warriors, passionate about finding a cure for this illness.
We created TwinsCoast2Coast to share the good, the bad and the funny of our lives and hope to inspire, support and educate others. Our intent is to simply tell our story, imperfections and all, and hope that it connects with those going through the life journey of chronic illness, whether as a patient, a caregiver or friend.
Please follow along with us on Instagram @TwinsCoast2Coast, 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.”