Be One with the Herd
The idea of being one-of-a-kind is better than the actual classification of it at times. A rare disease means a number of diverse things. It can mean a lack of treatment, lack of understanding, little to no information, and worse - a disease that many doctors don’t know exists or how to treat. To feel as if your disease is invalid can be maddening to say the least.
Many of us in the rare disease community may already be aware of this concept. Zebras. "When you hear hoof-beats, think of horses not zebras.” In other words, most times the obvious answer is the correct answer and “common things are common.” That common knowledge is emphasized in medical school when diagnosing diseases. Look for the obvious and the common. The horses are the common illnesses, all the misdiagnoses. However, we are not the horses, we are the zebras. We are the diseases you never heard of. We are the diseases you weren't looking for. We are the illness that you don’t understand. We are the zebras because our diseases were rare and undiscovered. Individuals with rare disorders are the zebras we never envisioned, but also so uncommon.
Between the beginning of the illness to effective treatment there are so many obstacles for these zebras. There are 30,000,000 Americans who struggle to get treatment, diagnosis, insurance reimbursements, or even just a doctor to help them. Zebras can feel alone and isolated because of the damaging physical and emotional stress of having a rare disorder.
However, although those with the rare diseases are zebras, they are still a part of a larger herd. Your herd is your family, friends, and co-workers who support you through this journey. Without the herd, there may be no zebra. The mother who is there each day checking in with her daughter to see if she made it to work. The husband who tries every diet to help his wife’s symptoms. The friend who will just sit by your side when you can't move. And even the dogs who cuddle with us when we have no more will or feel we cannot love anymore. While the suffers are the zebra, the herd is everyone else who is on your team each day.
It is important to recognize both the zebra and the herd, the rare disease patient and his/her support system, because fighting a rare disease does take a team. At RARE. we see you, we honor you, and we support you (zebras and herds) for what it takes to get you up each day to fight again. Thank you for allowing us to be a part of your herd.